Materiały źródłowe

• #1 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a rare, inherited disorder characterized by the abnormal accumulation of copper in various organs, primarily the liver and brain. This condition requires a comprehensive nursing care plan to address the complex medical, psychological, and social needs of affected individuals. […] The nursing care plan for Wilsons disease is designed to guide healthcare professionals in providing patient-centered care, optimizing treatment adherence, and offering support to patients and their families. […] This comprehensive care plan addresses the unique challenges associated with Wilsons disease, including the need for lifelong treatment, monitoring, and genetic counseling for affected families. […] Through this care plan, nurses play a critical role in ensuring that individuals with Wilsons disease receive holistic care that addresses their physical and emotional well-being.

• #2 Wilson’s disease – British Liver Trust

  https://britishlivertrust.org.uk/information-and-support/liver-conditions/wilsons-disease/

  If Wilsons disease is diagnosed early enough it can be effectively treated. Treatment is helpful at most stages of the disease. With early detection and successful treatment, people with Wilsons disease can enjoy a full, healthy life. […] Treatment for Wilsons disease is first aimed at removing excess copper from your body, then stopping copper from building up again. When you are first diagnosed it is likely that you will be advised to follow a diet that is low in copper. […] Most people are treated with medicines that remove copper called chelating agents. These medicines work by binding to copper and helping it get passed out of your body in your pee. […] Copper-chelating medicines have to be taken for the rest of your life, to keep removing extra copper from your body. It is very important that you do not stop taking this type of medicine or reduce the dose, unless your doctor tells you to. People have died because they stopped taking these medicines or didn’t take enough.

• #3 Wilson disease | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/wilson-disease

  Wilson disease is fatal without medical treatment. […] There is no cure, but the condition can be managed. […] Treatment options include medications, chelation therapy and avoiding foods high in copper. […] The aims of treatment are to reduce the amount of copper in the body and control the symptoms. Treatment must be lifelong. […] Options may include: vitamin B6 to bolster the nervous system, potassium supplements, taken before eating, to reduce the absorption of dietary copper, zinc therapy to prevent the absorption of copper in the small intestine, switching to a diet low in copper, chelation therapy, which is the use of medications (such as penicillamine) that bind to copper and allow it to be excreted in the urine, regular blood and urine tests to check copper levels so that treatment can be adjusted if necessary, liver transplant in severe cases, genetic counselling and testing for the family. […] Management of Wilson disease is lifelong. It is important to switch to a low copper diet.

• #4 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

• #5 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

• #6 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

• #7 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

• #8 Treatment – Wilson Disease Association

  https://wilsondisease.org/living-with-wilson-disease/treatment/

  Wilson disease is a very treatable condition. With proper therapy, disease progress can be halted and oftentimes symptoms can be improved. Treatment is aimed at removing excess accumulated copper and preventing its reaccumulation. Treatment for Wilson disease is a lifelong process. Patients may become progressively sicker from day to day, so immediate treatment can be critical. Treatment delays may cause irreversible damage. […] Taking your medicine as prescribed is extremely critical to the success of Wilson disease treatment. One of the advantages of having WD is that it is VERY treatable with effective, safe medications leading to a normal life expectancy . . . IF . . . you faithfully take your medications, as prescribed, LIFELONG. There are varying reasons for non-adherence in patients with WD and your physician has probably heard them all. Adherence is especially difficult in patients who were asymptomatic as diagnosis. These patients often do not see a cause and effect relationship.

• #9 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Wilson’s disease is treated with medicine that must be taken for life. […] For patients who have symptoms, the first goal of treatment is to remove as much copper from the body as possible. This is done with medicines called D-penicillamine or trientine hydrochloride. It may be weeks before it is clear whether the treatment worked. […] Your doctor will check your child’s drug therapy through physical exams, measurement of copper in the urine and blood, measurement of liver function, and blood cell counts. […] To manage Wilson’s disease, the focus of treatment is to reduce the amount of copper absorbed by the body. Taking extra zinc may help block the body’s absorption of copper. Patients also take vitamin B6 and follow a low-copper diet. This means avoiding mushrooms, nuts, chocolate, dried fruit, liver and shellfish.

• #10 Wilson’s disease: diagnosis and management – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/wilsons-disease-diagnosis-and-management

  Without treatment, WD is fatal and is best managed by a multidisciplinary team including neurologists, hepatologists, pharmacists and dietitians. […] The role of pharmacists is to recognise symptoms, educate patients on the consumption of low copper-containing foods and provide support on alcohol consumption to reduce liver damage. […] Pharmacists should also ensure that patients are not taking any medicines that can adversely affect the liver, check for any potential interactions and monitor the pharmacological therapy, as adverse effects of copper chelation can potentially worsen symptoms. […] Improving symptoms and preventing organ damage are the main aims of treatment for WD; however, this often means patients require lifelong treatment, particularly as stopping treatment may cause acute liver complications.

• #11 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Wilson’s disease is treated with medicine that must be taken for life. […] For patients who have symptoms, the first goal of treatment is to remove as much copper from the body as possible. This is done with medicines called D-penicillamine or trientine hydrochloride. It may be weeks before it is clear whether the treatment worked. […] Your doctor will check your child’s drug therapy through physical exams, measurement of copper in the urine and blood, measurement of liver function, and blood cell counts. […] To manage Wilson’s disease, the focus of treatment is to reduce the amount of copper absorbed by the body. Taking extra zinc may help block the body’s absorption of copper. Patients also take vitamin B6 and follow a low-copper diet. This means avoiding mushrooms, nuts, chocolate, dried fruit, liver and shellfish.

• #12 Treatment – Wilson Disease Association

  https://wilsondisease.org/living-with-wilson-disease/treatment/

  Patients being investigated or treated for Wilson disease should be cared for by specialists in Wilson disease or by specialists in consultation with their primary physicians. Stopping treatment completely will result in death, sometimes as quickly as within three months. Decreasing dosage of medications also can result in unnecessary disease progression.

• #13 Treatment – Wilson Disease Association

  https://wilsondisease.org/living-with-wilson-disease/treatment/

  Patients being investigated or treated for Wilson disease should be cared for by specialists in Wilson disease or by specialists in consultation with their primary physicians. Stopping treatment completely will result in death, sometimes as quickly as within three months. Decreasing dosage of medications also can result in unnecessary disease progression.

• #14 Wilson’s disease – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/wilsons-disease/diagnosis-treatment/drc-20353256

  Our caring team of Mayo Clinic experts can help you with your Wilson’s disease-related health concerns […] Your doctor might recommend medicines called copper chelating agents. These medicines attach themselves to copper and cause your organs to release that copper into your bloodstream. Your kidneys then filter the copper and release it into your urine. […] Treatment then focuses on stopping copper from building up again. For severe liver damage, a liver transplant might be needed. […] If you have Wilson’s disease, your doctor likely will recommend that you limit the amount of copper in your diet. Also, if you have copper pipes in your home, you might want to test the copper levels in your tap water. Be sure to stay away from multivitamins that contain copper. […] Ask your healthcare team for more information on foods that have high amounts of copper.

• #15 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Wilson’s disease is treated with medicine that must be taken for life. […] For patients who have symptoms, the first goal of treatment is to remove as much copper from the body as possible. This is done with medicines called D-penicillamine or trientine hydrochloride. It may be weeks before it is clear whether the treatment worked. […] Your doctor will check your child’s drug therapy through physical exams, measurement of copper in the urine and blood, measurement of liver function, and blood cell counts. […] To manage Wilson’s disease, the focus of treatment is to reduce the amount of copper absorbed by the body. Taking extra zinc may help block the body’s absorption of copper. Patients also take vitamin B6 and follow a low-copper diet. This means avoiding mushrooms, nuts, chocolate, dried fruit, liver and shellfish.

• #16 Wilson Disease: Facts, Causes & Treatment

  https://liverfoundation.org/liver-diseases/rare-disease/wilsons-disease/

  Wilson Disease is an inherited condition that causes the body to retain excess copper. The liver of a person who has Wilson Disease does not release copper into bile as it should. As the copper builds up in the liver, it begins to damage the organ. […] If left untreated, Wilson Disease results in increasing damage to the liver and brain, and will be deadly. […] Patients with acute liver failure due to Wilson Disease should be considered for liver transplantation. Liver transplantation effectively cures this disease, with a long-term survival rate of about 80%. […] Wilson Disease is treated with lifelong use of D-penicillamine or trientine hydrochloride, drugs that help remove copper from tissue, or zinc acetate, which stops the intestines from absorbing copper and promotes copper excretion. Patients will also need to take vitamin B6 and follow a low-copper diet, which means avoiding mushrooms, nuts, chocolate, dried fruit, liver, and shellfish. If detected early and treated properly, a person with Wilson disease can enjoy completely normal health.

• #17 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Wilson’s disease is treated with medicine that must be taken for life. […] For patients who have symptoms, the first goal of treatment is to remove as much copper from the body as possible. This is done with medicines called D-penicillamine or trientine hydrochloride. It may be weeks before it is clear whether the treatment worked. […] Your doctor will check your child’s drug therapy through physical exams, measurement of copper in the urine and blood, measurement of liver function, and blood cell counts. […] To manage Wilson’s disease, the focus of treatment is to reduce the amount of copper absorbed by the body. Taking extra zinc may help block the body’s absorption of copper. Patients also take vitamin B6 and follow a low-copper diet. This means avoiding mushrooms, nuts, chocolate, dried fruit, liver and shellfish.

• #18 Wilson’s disease – British Liver Trust

  https://britishlivertrust.org.uk/information-and-support/liver-conditions/wilsons-disease/

  After being diagnosed with Wilsons disease you will probably need to follow a low copper diet for a short time. This gives medicines that lower the amount of copper in your body time to work. […] If the medicines are working well and your condition is stable, you probably won’t need to carry on following a strict low copper diet in the long term. Your doctor or dietitian will advise you on this. […] If you develop cirrhosis you may need to follow special diet advice. Read more about diet and cirrhosis.

• #19 Medical care of patients with Wilson disease in Germany: a multidisciplinary survey among university centers | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02731-4

  Regular monitoring is crucial to ensure the adequacy of long-term therapy. Based on our survey, most WD patients are seen at least every three months (45%, n=25/55) to six months (38%, n=21/55). Taken together, 84% (n=46/55) of all departments follow-up with their patients at least biannually. […] WD patients need to obtain lifelong medical treatment to prevent the reaccumulation of copper and disease progression. With adequate therapy, the prognosis for WD patients is good. […] A routine screening of family members was performed in 84% (n=46/55) of the departments. […] Professional nutrition education was offered in 63% (n=34/54) of all departments. […] In cases of ALF or progressive, decompensating liver cirrhosis, LT may be the only therapeutic option. WD is the primary indication for 1% of all LTs in Europe. […] Taken together, the medical care of WD patients in Germany follows recommendations by international guidelines. Nevertheless, there are only a few institutions which utilize a multidisciplinary approach.

• #20 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Wilson’s disease is treated with medicine that must be taken for life. […] For patients who have symptoms, the first goal of treatment is to remove as much copper from the body as possible. This is done with medicines called D-penicillamine or trientine hydrochloride. It may be weeks before it is clear whether the treatment worked. […] Your doctor will check your child’s drug therapy through physical exams, measurement of copper in the urine and blood, measurement of liver function, and blood cell counts. […] To manage Wilson’s disease, the focus of treatment is to reduce the amount of copper absorbed by the body. Taking extra zinc may help block the body’s absorption of copper. Patients also take vitamin B6 and follow a low-copper diet. This means avoiding mushrooms, nuts, chocolate, dried fruit, liver and shellfish.

• #21 Medical care of patients with Wilson disease in Germany: a multidisciplinary survey among university centers | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02731-4

  Regular monitoring is crucial to ensure the adequacy of long-term therapy. Based on our survey, most WD patients are seen at least every three months (45%, n=25/55) to six months (38%, n=21/55). Taken together, 84% (n=46/55) of all departments follow-up with their patients at least biannually. […] WD patients need to obtain lifelong medical treatment to prevent the reaccumulation of copper and disease progression. With adequate therapy, the prognosis for WD patients is good. […] A routine screening of family members was performed in 84% (n=46/55) of the departments. […] Professional nutrition education was offered in 63% (n=34/54) of all departments. […] In cases of ALF or progressive, decompensating liver cirrhosis, LT may be the only therapeutic option. WD is the primary indication for 1% of all LTs in Europe. […] Taken together, the medical care of WD patients in Germany follows recommendations by international guidelines. Nevertheless, there are only a few institutions which utilize a multidisciplinary approach.

• #22 Medical care of patients with Wilson disease in Germany: a multidisciplinary survey among university centers | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02731-4

  Regular monitoring is crucial to ensure the adequacy of long-term therapy. Based on our survey, most WD patients are seen at least every three months (45%, n=25/55) to six months (38%, n=21/55). Taken together, 84% (n=46/55) of all departments follow-up with their patients at least biannually. […] WD patients need to obtain lifelong medical treatment to prevent the reaccumulation of copper and disease progression. With adequate therapy, the prognosis for WD patients is good. […] A routine screening of family members was performed in 84% (n=46/55) of the departments. […] Professional nutrition education was offered in 63% (n=34/54) of all departments. […] In cases of ALF or progressive, decompensating liver cirrhosis, LT may be the only therapeutic option. WD is the primary indication for 1% of all LTs in Europe. […] Taken together, the medical care of WD patients in Germany follows recommendations by international guidelines. Nevertheless, there are only a few institutions which utilize a multidisciplinary approach.

• #23 Wilson’s disease: diagnosis and management – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/wilsons-disease-diagnosis-and-management

  Pharmacists should support patients to manage their condition, providing advice on their medicines and by signposting to useful resources published by organisations, such as the British Liver Trust. […] Community pharmacists can also advise patients on how to reduce alcohol consumption and ensure they are vaccinated against diseases, such as viral hepatitis, to reduce further liver damage. […] It is important for patients to maintain muscle function and effectively manage occurrences of contractures. Community pharmacists can provide information on muscle strengthening and flexibility exercises and can signpost patients to local physiotherapists and occupational therapists. […] Patients who discontinue treatment are at a high risk of fulminant hepatic failure; therefore, it is recommended to continue life-long treatment.

• #24 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

• #25 Wilson’s disease: diagnosis and management – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/wilsons-disease-diagnosis-and-management

  Pharmacists should support patients to manage their condition, providing advice on their medicines and by signposting to useful resources published by organisations, such as the British Liver Trust. […] Community pharmacists can also advise patients on how to reduce alcohol consumption and ensure they are vaccinated against diseases, such as viral hepatitis, to reduce further liver damage. […] It is important for patients to maintain muscle function and effectively manage occurrences of contractures. Community pharmacists can provide information on muscle strengthening and flexibility exercises and can signpost patients to local physiotherapists and occupational therapists. […] Patients who discontinue treatment are at a high risk of fulminant hepatic failure; therefore, it is recommended to continue life-long treatment.

• #26 Treatment – Wilson Disease Association

  https://wilsondisease.org/living-with-wilson-disease/treatment/

  Wilson disease is a very treatable condition. With proper therapy, disease progress can be halted and oftentimes symptoms can be improved. Treatment is aimed at removing excess accumulated copper and preventing its reaccumulation. Treatment for Wilson disease is a lifelong process. Patients may become progressively sicker from day to day, so immediate treatment can be critical. Treatment delays may cause irreversible damage. […] Taking your medicine as prescribed is extremely critical to the success of Wilson disease treatment. One of the advantages of having WD is that it is VERY treatable with effective, safe medications leading to a normal life expectancy . . . IF . . . you faithfully take your medications, as prescribed, LIFELONG. There are varying reasons for non-adherence in patients with WD and your physician has probably heard them all. Adherence is especially difficult in patients who were asymptomatic as diagnosis. These patients often do not see a cause and effect relationship.

• #27 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  All Wilson disease patients need to take some type of medication therapy to remove excess dietary copper every day, for life. […] In some cases, WD patients may benefit from additional forms of therapy to help control emotional or physical symptoms or regain lost movement or speech. […] These other forms of therapy may be needed only for a short time while other patients may benefit from longer term therapy. […] People with Wilson disease may experience a range of psychological disorders over their lifetimes. […] Depression is the most common and may happen at a rate thats more than double that of the general population, according to preliminary results from the WDA Patient Registry Study. […] If depression is suspected, get in touch with your personal physician or a mental health professional for an evaluation.

• #28 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  During their lifetimes, WD patients may also have higher levels of stress and anxiety, bipolar disorder and suicidal ideation than the general population. […] These psychological disorders do not seem to be related to how severe a patients liver or neurological symptoms are. […] If you are suffering unusual or persistent behavioral or psychological symptoms, be sure to reach out to your doctor or appropriate health professional.

• #29 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  All Wilson disease patients need to take some type of medication therapy to remove excess dietary copper every day, for life. […] In some cases, WD patients may benefit from additional forms of therapy to help control emotional or physical symptoms or regain lost movement or speech. […] These other forms of therapy may be needed only for a short time while other patients may benefit from longer term therapy. […] People with Wilson disease may experience a range of psychological disorders over their lifetimes. […] Depression is the most common and may happen at a rate thats more than double that of the general population, according to preliminary results from the WDA Patient Registry Study. […] If depression is suspected, get in touch with your personal physician or a mental health professional for an evaluation.

• #30 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  During their lifetimes, WD patients may also have higher levels of stress and anxiety, bipolar disorder and suicidal ideation than the general population. […] These psychological disorders do not seem to be related to how severe a patients liver or neurological symptoms are. […] If you are suffering unusual or persistent behavioral or psychological symptoms, be sure to reach out to your doctor or appropriate health professional.

• #31 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  During their lifetimes, WD patients may also have higher levels of stress and anxiety, bipolar disorder and suicidal ideation than the general population. […] These psychological disorders do not seem to be related to how severe a patients liver or neurological symptoms are. […] If you are suffering unusual or persistent behavioral or psychological symptoms, be sure to reach out to your doctor or appropriate health professional.

• #32 Other Therapies – Wilson Disease Association

  https://wilsondisease.org/medical-professionals/other-therapies/

  During their lifetimes, WD patients may also have higher levels of stress and anxiety, bipolar disorder and suicidal ideation than the general population. […] These psychological disorders do not seem to be related to how severe a patients liver or neurological symptoms are. […] If you are suffering unusual or persistent behavioral or psychological symptoms, be sure to reach out to your doctor or appropriate health professional.

• #33 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #34 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #35 Difficulties in diagnosis and treatment of Wilson disease—a case series of five patients

  https://atm.amegroups.org/article/view/24544/html

  Wilson disease (WD) may present symptomatically at any age. Early diagnosis and compliance with anti-copper therapy are essential. […] A full consideration for the issues surrounding the diagnosis and treatment of WD can lead to optimised care with reduced risk of progression and disability. […] Treatment with DPA may lead to full recovery, even in relatively severe WD cases. […] Screening for WD is necessary in all siblings. Regular decoppering treatment of asymptomatic patients may protect from developing the clinical signs of WD as a previous study has shown that survival of fully compliant asymptomatic patients is similar to that of the general population. […] Liver acute failure of WD can be accompanied by hemolysis. Erythrocytes injury is probably caused by high concentrations of free copper due to liver cell necrosis. Even in patients awaiting liver transplantation anti-copper therapy should be started, because in some cases, it can lead to clinical improvement and transplantation is no longer needed.

• #36 Difficulties in diagnosis and treatment of Wilson disease—a case series of five patients

  https://atm.amegroups.org/article/view/24544/html

  Wilson disease (WD) may present symptomatically at any age. Early diagnosis and compliance with anti-copper therapy are essential. […] A full consideration for the issues surrounding the diagnosis and treatment of WD can lead to optimised care with reduced risk of progression and disability. […] Treatment with DPA may lead to full recovery, even in relatively severe WD cases. […] Screening for WD is necessary in all siblings. Regular decoppering treatment of asymptomatic patients may protect from developing the clinical signs of WD as a previous study has shown that survival of fully compliant asymptomatic patients is similar to that of the general population. […] Liver acute failure of WD can be accompanied by hemolysis. Erythrocytes injury is probably caused by high concentrations of free copper due to liver cell necrosis. Even in patients awaiting liver transplantation anti-copper therapy should be started, because in some cases, it can lead to clinical improvement and transplantation is no longer needed.

• #37 Wilson Disease: Facts, Causes & Treatment

  https://liverfoundation.org/liver-diseases/rare-disease/wilsons-disease/

  Wilson Disease is an inherited condition that causes the body to retain excess copper. The liver of a person who has Wilson Disease does not release copper into bile as it should. As the copper builds up in the liver, it begins to damage the organ. […] If left untreated, Wilson Disease results in increasing damage to the liver and brain, and will be deadly. […] Patients with acute liver failure due to Wilson Disease should be considered for liver transplantation. Liver transplantation effectively cures this disease, with a long-term survival rate of about 80%. […] Wilson Disease is treated with lifelong use of D-penicillamine or trientine hydrochloride, drugs that help remove copper from tissue, or zinc acetate, which stops the intestines from absorbing copper and promotes copper excretion. Patients will also need to take vitamin B6 and follow a low-copper diet, which means avoiding mushrooms, nuts, chocolate, dried fruit, liver, and shellfish. If detected early and treated properly, a person with Wilson disease can enjoy completely normal health.

• #38 Wilson’s disease: diagnosis and management – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/wilsons-disease-diagnosis-and-management

  Pharmacists should be aware of and be able to confidently identify symptoms of chronic liver disease (e.g. ascites and encephalopathy) and, if required, can support patients by ensuring diuretic therapy is optimised, infection prophylaxis is initiated and salt is restricted through dietary adjustments.

• #39 Wilson Disease Treatment & Management: Approach Considerations, Long-Term Monitoring, Bridge to Liver Transplantation in Acute Liver Failure

  https://emedicine.medscape.com/article/183456-treatment

  With clinical progression, acute liver failure, or worsening hepatic function, the patient must be evaluated at a center with expertise in Wilson disease and the capability to perform liver transplantation. […] Orthotopic liver transplantation is curative treatment for Wilson disease. However, liver support systems can act as bridges to liver transplantation. […] Lifelong, uninterrupted chelation therapy is necessary in all patients with Wilson disease. Frequent follow-up with patients is necessary, secondary to patient decompensation due to noncompliance. This is one of the major causes of fulminant liver failure. Patients must avoid most alcohol consumption and potential hepatotoxic drug therapy.

• #40 Medical care of patients with Wilson disease in Germany: a multidisciplinary survey among university centers | Orphanet Journal of Rare Diseases | Full Text

  https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02731-4

  Regular monitoring is crucial to ensure the adequacy of long-term therapy. Based on our survey, most WD patients are seen at least every three months (45%, n=25/55) to six months (38%, n=21/55). Taken together, 84% (n=46/55) of all departments follow-up with their patients at least biannually. […] WD patients need to obtain lifelong medical treatment to prevent the reaccumulation of copper and disease progression. With adequate therapy, the prognosis for WD patients is good. […] A routine screening of family members was performed in 84% (n=46/55) of the departments. […] Professional nutrition education was offered in 63% (n=34/54) of all departments. […] In cases of ALF or progressive, decompensating liver cirrhosis, LT may be the only therapeutic option. WD is the primary indication for 1% of all LTs in Europe. […] Taken together, the medical care of WD patients in Germany follows recommendations by international guidelines. Nevertheless, there are only a few institutions which utilize a multidisciplinary approach.

• #41 Wilson (Wilson’s) Disease | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/wilson-wilsons-disease

  Treatments include: Medications: Chelating drugs help remove excess copper in the body, sending it out through the urine. […] Lifestyle changes: These include dietary changes (eliminating foods with high levels of copper) and drinking-water changes (if you have well water or copper pipes). […] Treatment of neurological problems: These may include tremor, speech, swallowing, and/or walking problems that can be addressed with medication, physical therapy, and occupational therapy. […] Liver transplantation: Surgically replacing a badly diseased liver with a healthy liver or segment of a healthy liver from a human organ donor. […] Clinical trials: Patients at the University of Michigan may take part in a wide range of clinical trials testing new ways of using approved drugs or investigational new drugs.

• #42 Wilson’s disease: diagnosis and management – The Pharmaceutical Journal

  https://pharmaceutical-journal.com/article/ld/wilsons-disease-diagnosis-and-management

  Pharmacists should support patients to manage their condition, providing advice on their medicines and by signposting to useful resources published by organisations, such as the British Liver Trust. […] Community pharmacists can also advise patients on how to reduce alcohol consumption and ensure they are vaccinated against diseases, such as viral hepatitis, to reduce further liver damage. […] It is important for patients to maintain muscle function and effectively manage occurrences of contractures. Community pharmacists can provide information on muscle strengthening and flexibility exercises and can signpost patients to local physiotherapists and occupational therapists. […] Patients who discontinue treatment are at a high risk of fulminant hepatic failure; therefore, it is recommended to continue life-long treatment.

• #43 Wilson (Wilson’s) Disease | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/wilson-wilsons-disease

  Treatments include: Medications: Chelating drugs help remove excess copper in the body, sending it out through the urine. […] Lifestyle changes: These include dietary changes (eliminating foods with high levels of copper) and drinking-water changes (if you have well water or copper pipes). […] Treatment of neurological problems: These may include tremor, speech, swallowing, and/or walking problems that can be addressed with medication, physical therapy, and occupational therapy. […] Liver transplantation: Surgically replacing a badly diseased liver with a healthy liver or segment of a healthy liver from a human organ donor. […] Clinical trials: Patients at the University of Michigan may take part in a wide range of clinical trials testing new ways of using approved drugs or investigational new drugs.

• #44 Wilson Disease

  https://practicalneurology.com/articles/2021-sept/wilson-disease

  Ms G initiated treatment with 50 mg of zinc acetate 3 times a day and 500 mg of trientine twice daily. These are taken apart from each other and apart from meals. Because Ms G experienced nausea and upset stomach, zinc treatment was discontinued. Improvements in parkinsonism, dystonia, dysphagia, and hypersalivation were seen after 1 month of treatment. Because Ms G continued to experience some truncal dystonia, as described, the anticholinergic trihexyphenidyl was added to her treatment. […] Treatment of Wilson disease is targeted towards decreasing copper levels by inhibiting copper absorption and promoting copper excretion. Oral zinc preparations interfere with the intestinal absorption of copper, and multiple zinc salt preparations are available. Dosing of zinc is based on the quantity of elemental zinc, with standard dosing of 50 mg of elemental zinc 3 times daily. Copper chelation therapies include trientine and D-penicillamine, which both increase urinary copper excretion. In a subset of individuals, these copper chelation treatments may paradoxically lead to worsening of neurologic symptoms, proposed to be secondary to transient copper level elevation in the brain as existing copper stores are mobilized. […] D-penicillamine and trientine are used to treat Wilson disease because these agents facilitate copper excretion. Zinc is used to reduce copper absorption.

• #45 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Sometimes this drug therapy does not get rid of the high amounts of copper in the body. Liver transplant surgery may be needed for those with acute liver failure or very advanced liver disease. If a liver transplant is needed, the care team will treat symptoms and work to prevent complications while waiting for a donated liver. […] People with Wilson’s disease must continue their treatment for life. If the disorder is found early and treated the correct way, the child can expect a life of normal length and good quality. […] A liver transplant can save the life of a patient with liver failure caused by Wilson’s disease. Children with Wilson’s disease account for about 2% of all liver transplants done in children. […] The survival rate for children with liver failure caused by Wilson’s disease who have a liver transplant is as high as 90%. […] Neurologic recovery (mental status) depends on the level of brain damage at the time of transplant. The less damage suffered prior to transplant, the better the chance for recovery.

• #46 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Sometimes this drug therapy does not get rid of the high amounts of copper in the body. Liver transplant surgery may be needed for those with acute liver failure or very advanced liver disease. If a liver transplant is needed, the care team will treat symptoms and work to prevent complications while waiting for a donated liver. […] People with Wilson’s disease must continue their treatment for life. If the disorder is found early and treated the correct way, the child can expect a life of normal length and good quality. […] A liver transplant can save the life of a patient with liver failure caused by Wilson’s disease. Children with Wilson’s disease account for about 2% of all liver transplants done in children. […] The survival rate for children with liver failure caused by Wilson’s disease who have a liver transplant is as high as 90%. […] Neurologic recovery (mental status) depends on the level of brain damage at the time of transplant. The less damage suffered prior to transplant, the better the chance for recovery.

• #47 Wilson Disease: Facts, Causes & Treatment

  https://liverfoundation.org/liver-diseases/rare-disease/wilsons-disease/

  Wilson Disease is an inherited condition that causes the body to retain excess copper. The liver of a person who has Wilson Disease does not release copper into bile as it should. As the copper builds up in the liver, it begins to damage the organ. […] If left untreated, Wilson Disease results in increasing damage to the liver and brain, and will be deadly. […] Patients with acute liver failure due to Wilson Disease should be considered for liver transplantation. Liver transplantation effectively cures this disease, with a long-term survival rate of about 80%. […] Wilson Disease is treated with lifelong use of D-penicillamine or trientine hydrochloride, drugs that help remove copper from tissue, or zinc acetate, which stops the intestines from absorbing copper and promotes copper excretion. Patients will also need to take vitamin B6 and follow a low-copper diet, which means avoiding mushrooms, nuts, chocolate, dried fruit, liver, and shellfish. If detected early and treated properly, a person with Wilson disease can enjoy completely normal health.

• #48 Wilson Disease: Facts, Causes & Treatment

  https://liverfoundation.org/liver-diseases/rare-disease/wilsons-disease/

  Wilson Disease is an inherited condition that causes the body to retain excess copper. The liver of a person who has Wilson Disease does not release copper into bile as it should. As the copper builds up in the liver, it begins to damage the organ. […] If left untreated, Wilson Disease results in increasing damage to the liver and brain, and will be deadly. […] Patients with acute liver failure due to Wilson Disease should be considered for liver transplantation. Liver transplantation effectively cures this disease, with a long-term survival rate of about 80%. […] Wilson Disease is treated with lifelong use of D-penicillamine or trientine hydrochloride, drugs that help remove copper from tissue, or zinc acetate, which stops the intestines from absorbing copper and promotes copper excretion. Patients will also need to take vitamin B6 and follow a low-copper diet, which means avoiding mushrooms, nuts, chocolate, dried fruit, liver, and shellfish. If detected early and treated properly, a person with Wilson disease can enjoy completely normal health.

• #49 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Sometimes this drug therapy does not get rid of the high amounts of copper in the body. Liver transplant surgery may be needed for those with acute liver failure or very advanced liver disease. If a liver transplant is needed, the care team will treat symptoms and work to prevent complications while waiting for a donated liver. […] People with Wilson’s disease must continue their treatment for life. If the disorder is found early and treated the correct way, the child can expect a life of normal length and good quality. […] A liver transplant can save the life of a patient with liver failure caused by Wilson’s disease. Children with Wilson’s disease account for about 2% of all liver transplants done in children. […] The survival rate for children with liver failure caused by Wilson’s disease who have a liver transplant is as high as 90%. […] Neurologic recovery (mental status) depends on the level of brain damage at the time of transplant. The less damage suffered prior to transplant, the better the chance for recovery.

• #50 Wilson’s Disease | Causes, Symptoms, Diagnosis & Treatment

  https://www.cincinnatichildrens.org/health/w/wilsons-disease

  Sometimes this drug therapy does not get rid of the high amounts of copper in the body. Liver transplant surgery may be needed for those with acute liver failure or very advanced liver disease. If a liver transplant is needed, the care team will treat symptoms and work to prevent complications while waiting for a donated liver. […] People with Wilson’s disease must continue their treatment for life. If the disorder is found early and treated the correct way, the child can expect a life of normal length and good quality. […] A liver transplant can save the life of a patient with liver failure caused by Wilson’s disease. Children with Wilson’s disease account for about 2% of all liver transplants done in children. […] The survival rate for children with liver failure caused by Wilson’s disease who have a liver transplant is as high as 90%. […] Neurologic recovery (mental status) depends on the level of brain damage at the time of transplant. The less damage suffered prior to transplant, the better the chance for recovery.

• #51 Wilson’s disease – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/wilsons-disease/care-at-mayo-clinic/mac-20353259

  Specialists in genetics, liver disease (hepatology), neurology, psychiatry, laboratory medicine and nutrition work together to provide comprehensive and coordinated care for adults and children who have Wilson’s disease. […] Highly skilled adult and pediatric hepatologists treat more than 200 adults and 10 to 15 children with Wilson’s disease every year. They work with neurologists, psychologists and nephrologists to treat other symptoms related to Wilson’s disease.

• #52 Wilson disease | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/wilson-disease

  Wilson disease is fatal without medical treatment. […] There is no cure, but the condition can be managed. […] Treatment options include medications, chelation therapy and avoiding foods high in copper. […] The aims of treatment are to reduce the amount of copper in the body and control the symptoms. Treatment must be lifelong. […] Options may include: vitamin B6 to bolster the nervous system, potassium supplements, taken before eating, to reduce the absorption of dietary copper, zinc therapy to prevent the absorption of copper in the small intestine, switching to a diet low in copper, chelation therapy, which is the use of medications (such as penicillamine) that bind to copper and allow it to be excreted in the urine, regular blood and urine tests to check copper levels so that treatment can be adjusted if necessary, liver transplant in severe cases, genetic counselling and testing for the family. […] Management of Wilson disease is lifelong. It is important to switch to a low copper diet.

• #53 Wilson’s disease – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/wilsons-disease/care-at-mayo-clinic/mac-20353259

  Specialists in genetics, liver disease (hepatology), neurology, psychiatry, laboratory medicine and nutrition work together to provide comprehensive and coordinated care for adults and children who have Wilson’s disease. […] Highly skilled adult and pediatric hepatologists treat more than 200 adults and 10 to 15 children with Wilson’s disease every year. They work with neurologists, psychologists and nephrologists to treat other symptoms related to Wilson’s disease.

• #54 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #55 Wilson (Wilson’s) Disease | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/wilson-wilsons-disease

  Wilson disease is a genetic disorder that causes excessive amounts of copper to accumulate in the body, affecting the liver and brain. […] The Wilson Disease Clinic, part of the University of Michigans Hepatology Program, is a Wilson Disease Center of Excellence, as designated by Wilson Disease Association. […] At the University of Michigan, we provide comprehensive, multidisciplinary care for patients with Wilson disease. Our team consists of a liver doctor, neurologist, speech pathologist, liver transplant doctors, dieticians, genetic counselors, psychiatrists, laboratory technicians who are experts in measuring copper, as well as our nurse specialist and patient coordinator, all of whom specialize in the treatment of Wilsons disease. […] The goal of treatment is to first remove the excess copper and then achieve a more typical level of copper in the body long-term.

• #56 Wilson Disease | Northwestern Medicine

  https://www.nm.org/conditions-and-care-areas/neurosciences/movement-disorders/wilson-disease

  Wilson disease is a rare genetic disorder that prevents your body from getting rid of extra copper in your system. […] Lifelong treatment is needed to reduce the amount of copper in your body. […] The Northwestern Medicine Movement Disorders Center is one of six world-wide Wilson Disease Centers of Excellence. […] We do this by: Using a multidisciplinary approach to the diagnosis and treatment. This includes a collaboration of experts in the fields such as adult and pediatric neurology, hepatology, psychiatry, nursing, genetics and social work. […] Northwestern Medicine has earned designation as a Center of Excellence from the Wilson Disease Association. This demonstrates our commitment to optimizing Wilson disease care, and diagnosis and follow-up of people affected by the disease.

• #57 Wilson Disease Specialists and Care Centers | Northwestern Medicine

  https://www.nm.org/conditions-and-care-areas/neurosciences/movement-disorders/wilson-disease/specialists-and-care-centers

  The Northwestern Medicine Movement Disorders Clinic is a designated Wilson Disease Center of Excellence, one of six designated centers world-wide. Patients receive comprehensive diagnosis and treatment from an experienced, multidisciplinary team that includes: […] We continually improve the quality of patient care in Wilson disease, advance knowledge about the disease, and provide long-term support for patients and their families. […] The Northwestern Medicine Movement Disorders Center is one of six world-wide Wilson Disease Centers of Excellence, demonstrating our commitment to optimizing Wilson disease care.

• #58 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #59 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #60 Pediatric Wilson’s disease – Children’s Health Gastroenterology (GI)

  https://www.childrens.com/specialties-services/conditions/pediatric-wilsons-disease

  With Wilsons disease, early diagnosis and treatment are crucial. […] The liver experts at Children’s Health draw on their deep experience and the latest tools and methods to give your child the best care. […] In cases requiring a liver transplant, we are proud to offer the only pediatric liver transplant program in North Texas, with outcomes that are consistently better than national averages. […] There are several different ways to treat Wilsons disease, including medicine, diet, and in severe cases, a liver transplant. […] In many cases we can use medicine and diet to stop Wilsons disease from doing damage. […] For medicine, we will prescribe penicillamine or trientine. […] These prevent the body from absorbing copper and help flush it out as waste. […] Patients with Wilsons disease need to follow a low-copper diet.

• #61 Pediatric Wilson’s disease – Children’s Health Gastroenterology (GI)

  https://www.childrens.com/specialties-services/conditions/pediatric-wilsons-disease

  Our team includes registered dietitians who work with families to develop healthy meal plans for kids with Wilsons disease. […] In some cases, a child may require a liver transplant. […] After a transplant, a childs new liver processes copper correctly. […] Children with Wilsons disease tend to do very well if we identify the disease early on. […] They need to take medication daily but still can enjoy a long and active life. […] Survival rates after liver transplant are quite high, but the disease can cause other types of damage that are harder to address. […] A childs chances of regaining brain function depend on how much damage occurs before they begin treatment. […] This is one reason that diagnosing Wilsons disease early is so important.

• #62 Wilson Disease – Seattle Children’s

  https://www.seattlechildrens.org/conditions/wilson-disease/

  Treatment for Wilson disease is lifelong. The first step is to get rid of extra copper in the body. Then the goal is to keep copper levels normal, using medicines and a low-copper diet. […] The team in our Biochemical Genetics Clinic will give your child complete care. Depending on your child’s needs, they may see Seattle Children’s experts in liver disease (hepatologists), neurologists, psychiatrists, dietitians, social workers, physical therapists and speech therapists. […] The specialists at our Biochemical Genetics Clinic will monitor your child’s health over the long term. We check for new symptoms, assess if treatment is working and look for side effects. […] If your child was diagnosed before Wilson disease caused symptoms and liver damage, the goal is to keep them healthy and prevent damage. If Wilson disease harmed your child’s liver or brain, the goal is to improve your child’s symptoms and help them live a healthy life. […] Children born with Wilson disease need lifelong care to stay healthy. Our Biochemical Genetics team provides a „medical home” for babies, children and young adults with known or suspected Wilson disease and other inherited metabolic disorders.

• #63 Wilson’s Disease: How to Care for a Child with Wilson’s Disease – Care Options for Kids

  https://careoptionsforkids.com/blog/wilsons-disease

  For children diagnosed with this condition, there can be considerable specialized care needs. From managing medication and side effects to helping with recovery from surgery and transplant, it is important to ensure your child has the help and positive environment they need. In many cases, pediatric home care can be a highly beneficial part of the treatment picture. […] At Care Options for Kids, we understand the unique challenges of caring for a child with basic to medically complex health conditions. Our dedicated team of pediatric home health care nurses is here to support your family with compassionate, expert care tailored to your childs needs. Contact us today to schedule an assessment and learn how we can help you navigate this journey with confidence and care.

• #64 Wilson’s Disease: How to Care for a Child with Wilson’s Disease – Care Options for Kids

  https://careoptionsforkids.com/blog/wilsons-disease

  For children diagnosed with this condition, there can be considerable specialized care needs. From managing medication and side effects to helping with recovery from surgery and transplant, it is important to ensure your child has the help and positive environment they need. In many cases, pediatric home care can be a highly beneficial part of the treatment picture. […] At Care Options for Kids, we understand the unique challenges of caring for a child with basic to medically complex health conditions. Our dedicated team of pediatric home health care nurses is here to support your family with compassionate, expert care tailored to your childs needs. Contact us today to schedule an assessment and learn how we can help you navigate this journey with confidence and care.

• #65 Wilson’s Disease: How to Care for a Child with Wilson’s Disease – Care Options for Kids

  https://careoptionsforkids.com/blog/wilsons-disease

  For children diagnosed with this condition, there can be considerable specialized care needs. From managing medication and side effects to helping with recovery from surgery and transplant, it is important to ensure your child has the help and positive environment they need. In many cases, pediatric home care can be a highly beneficial part of the treatment picture. […] At Care Options for Kids, we understand the unique challenges of caring for a child with basic to medically complex health conditions. Our dedicated team of pediatric home health care nurses is here to support your family with compassionate, expert care tailored to your childs needs. Contact us today to schedule an assessment and learn how we can help you navigate this journey with confidence and care.

• #66 Assessment and factors affecting quality of life among patients with Wilson’s disease | Scientific Reports

  https://www.nature.com/articles/s41598-024-59377-w

  Anxiety, depression, and clinical symptoms severity are vital factors for the QoL of patients with Wilsons disease. […] This study examined the QoL of patients with Wilsons disease in China and determined factors that affect it, thus providing foundational evidence for interventions aimed at improving the QoL in this patient group. […] Comprehensive nursing interventions will help improve the QoL in this context.

• #67 Assessment and factors affecting quality of life among patients with Wilson’s disease | Scientific Reports

  https://www.nature.com/articles/s41598-024-59377-w

  Anxiety, depression, and clinical symptoms severity are vital factors for the QoL of patients with Wilsons disease. […] This study examined the QoL of patients with Wilsons disease in China and determined factors that affect it, thus providing foundational evidence for interventions aimed at improving the QoL in this patient group. […] Comprehensive nursing interventions will help improve the QoL in this context.

• #68 Assessment and factors affecting quality of life among patients with Wilson’s disease | Scientific Reports

  https://www.nature.com/articles/s41598-024-59377-w

  Anxiety, depression, and clinical symptoms severity are vital factors for the QoL of patients with Wilsons disease. […] This study examined the QoL of patients with Wilsons disease in China and determined factors that affect it, thus providing foundational evidence for interventions aimed at improving the QoL in this patient group. […] Comprehensive nursing interventions will help improve the QoL in this context.

• #69 Assessment and factors affecting quality of life among patients with Wilson’s disease | Scientific Reports

  https://www.nature.com/articles/s41598-024-59377-w

  Anxiety, depression, and clinical symptoms severity are vital factors for the QoL of patients with Wilsons disease. […] This study examined the QoL of patients with Wilsons disease in China and determined factors that affect it, thus providing foundational evidence for interventions aimed at improving the QoL in this patient group. […] Comprehensive nursing interventions will help improve the QoL in this context.

• #70 First Wilson Disease patient receives gene therapy at UC Davis Health

  https://health.ucdavis.edu/news/headlines/first-wilson-disease-patient-receives-gene-therapy-at-uc-davis-health/2023/09

  Wilson Disease, a rare genetic disorder with no cure, has evaded comprehensive treatment for generations of patients. Untreated Wilson Disease can cause liver failure, neurologic and psychiatric symptoms and is ultimately fatal. […] Current treatment options for Wilson Disease involve the often complicated and lifetime use of medications, said Valentina Medici, vice chair for research in internal medicine and principal investigator for the trial. Additionally, these treatments just control the disease and do not cure it. Finding a treatment that could address the underlying cause would tremendously improve the quality of life for patients suffering from the disease. […] The goal of the infusion is to normalize copper metabolism in patients with Wilson disease. […] If successful, this one-time treatment will correct the underlying defect and allow patients to stop their oral medications.

• #71 First Wilson Disease patient receives gene therapy at UC Davis Health

  https://health.ucdavis.edu/news/headlines/first-wilson-disease-patient-receives-gene-therapy-at-uc-davis-health/2023/09

  Wilson Disease, a rare genetic disorder with no cure, has evaded comprehensive treatment for generations of patients. Untreated Wilson Disease can cause liver failure, neurologic and psychiatric symptoms and is ultimately fatal. […] Current treatment options for Wilson Disease involve the often complicated and lifetime use of medications, said Valentina Medici, vice chair for research in internal medicine and principal investigator for the trial. Additionally, these treatments just control the disease and do not cure it. Finding a treatment that could address the underlying cause would tremendously improve the quality of life for patients suffering from the disease. […] The goal of the infusion is to normalize copper metabolism in patients with Wilson disease. […] If successful, this one-time treatment will correct the underlying defect and allow patients to stop their oral medications.

• #72 Wilson (Wilson’s) Disease | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/wilson-wilsons-disease

  Treatments include: Medications: Chelating drugs help remove excess copper in the body, sending it out through the urine. […] Lifestyle changes: These include dietary changes (eliminating foods with high levels of copper) and drinking-water changes (if you have well water or copper pipes). […] Treatment of neurological problems: These may include tremor, speech, swallowing, and/or walking problems that can be addressed with medication, physical therapy, and occupational therapy. […] Liver transplantation: Surgically replacing a badly diseased liver with a healthy liver or segment of a healthy liver from a human organ donor. […] Clinical trials: Patients at the University of Michigan may take part in a wide range of clinical trials testing new ways of using approved drugs or investigational new drugs.

• #73 Wilson Disease Treatment & Management: Approach Considerations, Long-Term Monitoring, Bridge to Liver Transplantation in Acute Liver Failure

  https://emedicine.medscape.com/article/183456-treatment

  The mainstay of therapy for Wilson disease is pharmacologic treatment with chelating agents such as D-penicillamine and trientine dihydrochloride for de-coppering and maintenance. Penicillamine is the only FDA-approved therapy for initial decoppering. All forms of trientine have FDA approval for maintenance therapy, although trientine has been used off label for initial de-coppering. Zinc salts compete for adsorption of copper and act as inductors of methallothioneins, which favor a negative copper balance and a reduction of free plasmatic copper. At present, zinc has FDA approval only for maintenance therapy, not for initial de-coppering. Tetrathiomolybdate is an investigational chelating agent. […] After the initiation of therapy with a chelating agent, the patient needs to be aware of potential adverse effects of the agents with which he or she is being treated. For instance, some of the concerning adverse effects are those commonly associated with penicillamine use. In addition, a patient must also be aware of the potential to develop worsening of some symptoms when chelation is started; in particular, patients with neurologic signs and symptoms can see worsening of these with chelation, and, in some instances, therapy needs to be reduced or stopped. Laboratory tests in patients started on penicillamine should include hematology and biochemical monitoring, as well as urinalysis.

• #74 First Wilson Disease patient receives gene therapy at UC Davis Health

  https://health.ucdavis.edu/news/headlines/first-wilson-disease-patient-receives-gene-therapy-at-uc-davis-health/2023/09

  The patient should be able to return to a normal diet instead of the restrictive one that Wilson Disease patients undertake due to complications associated with copper buildup in the body. […] We are encouraged by the safe administration of the gene therapy and promising preliminary results, but the same success needs to be seen in more patients before the treatment can be approved, said Medici.

• #75 Wilson’s disease: from the liver to the brain | Nursing Times

  https://www.nursingtimes.net/archive/wilsons-disease-from-the-liver-to-the-brain-26-07-2001/

  Wilson’s disease (WD) is a rare but potentially treatable condition with an estimated incidence of one in 30,000. It usually presents in childhood, but about 30% of patients are adults when they are diagnosed. The symptoms are diverse, which means that nurses in all specialties could find themselves caring for a patient with the condition. […] Patients with WD may present in any field at any age, usually with an unusual variety of symptoms. These can delay diagnosis, with dire consequences. Early treatment is essential to recovery so the nurse can play a vital role in diagnosis. Another essential role for the nurse is supporting patients and their families to promote treatment compliance and ensure a long and disease-free life.

• #76 Wilson’s disease: from the liver to the brain | Nursing Times

  https://www.nursingtimes.net/archive/wilsons-disease-from-the-liver-to-the-brain-26-07-2001/

  Wilson’s disease (WD) is a rare but potentially treatable condition with an estimated incidence of one in 30,000. It usually presents in childhood, but about 30% of patients are adults when they are diagnosed. The symptoms are diverse, which means that nurses in all specialties could find themselves caring for a patient with the condition. […] Patients with WD may present in any field at any age, usually with an unusual variety of symptoms. These can delay diagnosis, with dire consequences. Early treatment is essential to recovery so the nurse can play a vital role in diagnosis. Another essential role for the nurse is supporting patients and their families to promote treatment compliance and ensure a long and disease-free life.

• #77 Wilson’s disease: from the liver to the brain | Nursing Times

  https://www.nursingtimes.net/archive/wilsons-disease-from-the-liver-to-the-brain-26-07-2001/

  Wilson’s disease (WD) is a rare but potentially treatable condition with an estimated incidence of one in 30,000. It usually presents in childhood, but about 30% of patients are adults when they are diagnosed. The symptoms are diverse, which means that nurses in all specialties could find themselves caring for a patient with the condition. […] Patients with WD may present in any field at any age, usually with an unusual variety of symptoms. These can delay diagnosis, with dire consequences. Early treatment is essential to recovery so the nurse can play a vital role in diagnosis. Another essential role for the nurse is supporting patients and their families to promote treatment compliance and ensure a long and disease-free life.

• #78 Wilson Disease – Nutritional Disorders – Merck Manual Professional Edition

  https://www.merckmanuals.com/professional/nutritional-disorders/mineral-deficiency-and-toxicity/wilson-disease

  Wilson disease results in accumulation of copper in the liver and other organs. Treatment consists of a low-copper diet and drugs such as penicillamine or trientine. […] Continual, lifelong treatment of Wilson disease is mandatory regardless of whether symptoms are present. A low-copper diet (eg, avoiding beef liver, cashews, black-eyed peas, vegetable juice, shellfish, mushrooms, and cocoa) and use of penicillamine, trientine, and sometimes oral zinc can prevent copper from accumulating. […] Poor long-term adherence to drug therapy is common. After 1 to 5 years of therapy, lower dose maintenance drug therapy can be considered. Regular follow-up care with an expert in liver disease is recommended. […] Advise patients to follow a low copper diet, and treat them with penicillamine, trientine, or, if these drugs are intolerable or ineffective, oral zinc.

• #79 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  In conclusion, the nursing care plan for Wilsons disease represents a comprehensive approach to addressing the unique challenges posed by this complex condition. […] The care plan acknowledges the importance of early detection, prompt treatment, and adherence to a low-copper diet to manage the condition effectively. […] By providing counseling, facilitating access to support groups, and addressing the emotional needs of patients and their families, healthcare providers contribute to the holistic well-being of those affected by this condition.

• #80 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  In conclusion, the nursing care plan for Wilsons disease represents a comprehensive approach to addressing the unique challenges posed by this complex condition. […] The care plan acknowledges the importance of early detection, prompt treatment, and adherence to a low-copper diet to manage the condition effectively. […] By providing counseling, facilitating access to support groups, and addressing the emotional needs of patients and their families, healthcare providers contribute to the holistic well-being of those affected by this condition.

• #81 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  In conclusion, the nursing care plan for Wilsons disease represents a comprehensive approach to addressing the unique challenges posed by this complex condition. […] The care plan acknowledges the importance of early detection, prompt treatment, and adherence to a low-copper diet to manage the condition effectively. […] By providing counseling, facilitating access to support groups, and addressing the emotional needs of patients and their families, healthcare providers contribute to the holistic well-being of those affected by this condition.

• #82 Nursing Care Plan For Wilson’s Disease – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-wilsons-disease/

  Wilsons disease is a complex disorder that requires a comprehensive nursing assessment to develop an effective care plan. […] This comprehensive nursing assessment serves as the foundation for developing an individualized care plan that addresses the specific needs and challenges associated with Wilsons disease. […] These nursing diagnoses are intended to guide healthcare professionals in providing individualized care and support to patients with Wilsons disease. […] A comprehensive approach that addresses both physical and psychosocial aspects of care is essential to optimize outcomes and enhance the quality of life for these individuals. […] These nursing interventions aim to provide holistic care for individuals with Wilsons disease, addressing their physical, emotional, and psychosocial needs. […] Collaborative care, patient education, and ongoing support are essential components of managing this complex condition effectively.

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