Materiały źródłowe

• #1

  https://journals.lww.com/ajnonline/fulltext/2015/07000/ce__nursing_management_of_patients_with.25.aspx

  Ehlers-Danlos syndrome (EDS), a hereditary connective tissue disorder, has historically been misunderstood and underdiagnosed by health care providers. […] Because of the high degree of phenotypic variability, patients are often correctly diagnosed only after years of seemingly unrelated but debilitating injuries and illnesses. […] As awareness and recognition of the syndrome improve, nurses are increasingly likely to care for patients with EDS. […] This article gives a brief overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients quality of life. […] It’s imperative that nurses familiarize themselves with the often disabling, sometimes life-threatening clinical manifestations of this syndrome. […] The main goals of clinical management are threefold: to control symptoms, manage pain, and recognize and treat potentially life-threatening complications.

• #2

  https://www.chronicpainpartners.com/nursing-management-patients-ehlers-danlos-syndrome/

  Nursing Management of Patients with EhlersDanlos Syndrome […] There is little mention in the nursing literature regarding EDS. Nurses are generally unfamiliar with the conditions signs and symptoms, and few health care organizations have established clinical protocols for assessing and managing these patients. […] Its imperative that nurses familiarize themselves with the often disabling, sometimes life-threatening clinical manifestations of this syndrome. […] This article gives a brief overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients quality of life.

• #3 Ehlers-Danlos Syndrome: Symptoms, Causes & Treatment

  https://my.clevelandclinic.org/health/diseases/17813-ehlers-danlos-syndrome

  Avoid playing high-impact sports. Intense physical activity like contact sports increases your risk of a joint injury (especially dislocations). […] Visit a healthcare provider if you notice any changes in your body that make your skin or joints feel weaker or loose. See a provider if you notice that youre bruising or bleeding more often than you used to. […] Ehlers-Danlos syndrome (EDS) is a genetic condition that affects your bodys ability to produce collagen that supports your connective tissue. It can make your skin, joints and other tissue weaker and more flexible than they should be. Your healthcare provider will help you find treatments to manage your symptoms and prevent injuries.

• #4 Nursing care for patients with the Ehlers-Danlos and other hypermobility syndromes | Veenhuizen | Journal of Nursing Education and Practice

  https://www.sciedu.ca/journal/index.php/jnep/article/view/2947

  Ehlers-Danlos syndrome is a rare genetic disorder, with mainly three symptoms: hypermobility, fragile skin and fragile veins. In this article we discuss the syndrome and we consider the consequences for nursing care of the three most common types of EDS. […] As a nurse it is important to be aware of the strongly varying needs of patients both during the day and night and their pain and fatigues, which all patients report, and report as being as very troublesome. It is essential that nurses, during hospitalization, should bear in mind that patients may have to cope with hypermobility of the joints, fragile skin, possible dysfunctional vasoconstriction and the often present generalized autonomous disregulation. Because the pattern of complaints varies markedly from patient to patient, good communication between nurse and patient is very important.

• #5 Ehlers-Danlos syndrome – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/diagnosis-treatment/drc-20362149

  Our caring team of Mayo Clinic experts can help you with your Ehlers-Danlos syndrome-related health concerns […] There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications. […] Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. […] Surgery may be recommended to repair joints damaged by repeated dislocations, or to repair ruptured areas in blood vessels and organs. […] If you have Ehlers-Danlos syndrome, it’s important to prevent injuries. […] Encourage your child to participate in physical activities with appropriate boundaries. […] Your child’s doctor or physical therapist also may have recommendations.

• #6 Nursing care planning in Ehlers-Danlos syndrome | Nursing Times

  https://www.nursingtimes.net/leadership/nursing-care-planning-in-ehlers-danlos-syndrome-24-08-2012/

  Care planning for patients with this connective tissue disorder must take a holistic approach. […] Nursing care plans should take a holistic approach, making use of assessment data and nurses clinical judgement, to provide a client-specific, realistic nursing outcome. […] For patients with EDS, many areas of their general health and ability to cope with life processes are affected and need to be considered in all planning. […] Nurses need to accept that those with EDS may truly be expert patients. […] The best way to help informed patients with EDS is to involve them in care planning. […] Nurses should allow hospital patients to continue, as much as possible, with self-help regimens.

• #7

  https://journals.lww.com/ajnonline/fulltext/2015/07000/ce__nursing_management_of_patients_with.25.aspx

  For patients with EDS, it’s crucial to maintain skin integrity and reduce the risk of wounds and breakdown. […] Nurses must use caution when moving patients with EDS (particularly if they’re unconscious or sedated), taking care to support all joints in positioning. […] Many patients will require close monitoring during ambulation. […] Patients with POTS tend to experience instability in their heart rate and blood pressure with movement, and can be prone to lightheadedness and fainting. […] Managing patient expectations can be challenging. […] For those who do receive a diagnosis from a knowledgeable clinician, it can be discouraging to learn that there is no definitive treatment and that symptom management is challenging and unpredictable. […] Nurses can best assist these patients by becoming knowledgeable about the syndrome and by helping them to find and access appropriate health care resources.

• #8 Ehlers-Danlos Syndrome – Rheumatology Advisor

  https://www.rheumatologyadvisor.com/ddi/ehlers-danlos-syndrome/

  Ehlers-Danlos syndrome is a group of inherited connective tissue disorders that primarily affects the skin, joints, and blood vessel walls but can affect every organ system and result in significant morbidity and mortality. Typical clinical manifestations are skin hyperelasticity, hypermobility of joints, the fragility of blood vessels, and atrophic scarring. […] Treatment is generally focused on implementing preventative measures against disease progression and life-threatening complications. Specialists typically manage specific care within the field of concerning pathology for the particular subtypes of Ehlers-Danlos. For example, a cardiologist would usually monitor cardiovascular concerns for vascular Ehlers-Danlos syndrome patients. […] Collagen abnormalities can lead to poor wound healing of the skin, so wound care should be meticulous, often involving a generous application of deep stitches that are left in for extended periods. Having hypermobile joints increases the risk of joint subluxation and dislocation. Each dislocation increases the risk for subsequent dislocations, and repeated incidents can cause early osteoarthritis and chronic pain.

• #9 Caring For Patients with Ehlers-Danlos Syndrome – Dimensions of Dental Hygiene

  https://dimensionsofdentalhygiene.com/article/caring-for-patients-with-ehlers-danlos-syndrome/

  Finally and most important, the need for meticulous patient oral self-care must be emphasized. Patients with wrist hypermobility may have difficulty with oral hygiene. […] If the gingival tissue is fragile, patients tend to brush less frequently, leading to high plaque scores and furthering oral disease. Dental hygienists should recommend ultra-soft toothbrushes to prevent damage to the gingival margin.

• #10 Ehlers-Danlos Syndrome – Rheumatology Advisor

  https://www.rheumatologyadvisor.com/ddi/ehlers-danlos-syndrome/

  Prevention revolves around patient counseling regarding the limitation of high-risk activities such as contact sports and weightlifting. Structural abnormalities of the heart may require surgical intervention. Pain management and management of gastrointestinal and psychological complications are tailored to the individual. […] Patients with hypermobility Ehlers-Danlos may especially benefit from low-resistance exercise, physical therapy, and assistive devices like braces, scooters, and wheelchairs. […] Careful monitoring of Ehlers-Danlos patients is recommended. Regular hypertension and arterial disease screening should be conducted, as these increase the complications associated with blood vessel fragility. […] Psychosocial support is crucial for patients with Ehlers-Danlos, as they face many psychosocial challenges. These challenges stem from the fact that there is no cure, preventative treatments do not often improve current symptoms, the disease may impact the ability to have children, and activity restrictions can be overbearing. […] Due to Ehlers-Danlos being a multi-system disease process, patients benefit most from an inter-professional approach to their care. A knowledgeable primary care physician is needed and should coordinate the patients care for both surveillance and treatment needs.

• #11 Genetics of Ehlers-Danlos Syndrome Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/943567-treatment

  Pay careful attention to cardiac auscultation and evaluation. The murmur of mitral valve prolapse (particularly in classical and hypermobility types of EDS) should be noted. […] Adults with vascular-type EDS (type IV) are at risk for arterial aneurysm and rupture, noninvasive visualization of the arterial tree may be indicated. […] High-dose (1-4 g/d) ascorbic acid (vitamin C) therapy has been tried and, in theory, has a potential effect. […] Surgical teams caring for patients with Ehlers-Danlos syndrome (EDS) need to be informed of any history of vascular problems or bleeding concerns. […] Instruct patients with Ehlers-Danlos syndrome to avoid excessive or repetitive heavy lifting and other movements that produce undue strain or stress on their already hypermobile joints (eg, finger hyperextension that occurs with pushing off of a wall with the palms of the hands).

• #12 Genetics of Ehlers-Danlos Syndrome Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/943567-treatment

  Advise patients to minimize joint trauma by avoiding joint hyperextension or joint locking. Recurrent hyperextension of the joints may lead to a traumatic arthritis with associated joint pain. […] However, appropriate strengthening exercises and carefully monitored low-level weight training may improve joint stability. Guidance from a physical therapist is recommended.

• #13 What is Ehlers-Danlos Syndrome? How Do I Know If I Have It? – RTHM

  https://rthm.com/articles/what-is-ehlers-danlos-syndrome/

  Good skincare practices, including gentle handling of the skin, avoiding trauma, and using moisturizers and sun protection, can help maintain skin integrity. […] Appropriate wound care, including gentle cleansing, protection, and timely treatment of wounds, can help promote healing and minimize complications. […] As EDS is a genetic disorder, individuals with EDS or their family members may consider genetic counseling to understand the inheritance pattern, recurrence risks, and family planning options. […] Maintaining optimal blood pressure is important for overall health, but even more important in those with vEDS. […] In some patients, such as those with vEDS, surgical interventions may be necessary to manage complications or prevent arterial rupture. […] Chronic pain is often associated with EDS. Pain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, or in some cases, prescribed analgesics, may be used to manage pain.

• #13 What is Ehlers-Danlos Syndrome? How Do I Know If I Have It? – RTHM

  https://rthm.com/articles/what-is-ehlers-danlos-syndrome/

  Do your joints move in ways outside of the standard range of motion? […] EDS requires a multi-disciplinary group of healthcare professionals that can include geneticists, physical therapists, occupational therapists, cardiologists, dermatologists, pain specialists, and other providers to provide a comprehensive treatment plan tailored to each individual patient. […] Targeted exercises and physical therapy can help improve muscle strength, joint stability, and coordination. A physical therapist familiar with EDS can guide you through appropriate exercises and techniques to help you protect your joints. […] Individuals with EDS are prone to joint dislocations and injuries. Strategies for joint protection, such as bracing or taping, may be recommended to provide stability and reduce the risk of joint damage.

• #13 What is Ehlers-Danlos Syndrome? How Do I Know If I Have It? – RTHM

  https://rthm.com/articles/what-is-ehlers-danlos-syndrome/

  Psychological support, such as counseling or support groups, can help individuals cope with challenges and maintain a positive outlook. […] Individuals with vEDS, for example, may receive education about the signs and symptoms of potential complications, such as arterial rupture, and have an emergency plan in place.

• #14 Ehlers-Danlos Syndrome | University Hospitals

  https://www.uhhospitals.org/health-information/health-and-wellness-library/article/diseases-and-conditions/ehlers-danlos-syndrome

  Physical and occupational therapy. These can improve joint strength and function. […] Regular exercise. Being active every day can lessen joint and muscle pain. But don’t do activities that can damage or dislocate your joints. These include contact sports, weight lifting, and running. Activities such as walking and swimming are best. […] Mobility devices, such as a wheelchair or braces. These can help if you have trouble walking. […] Pain medicine. To ease chronic pain, your provider may advise over-the-counter or prescription medicines like acetaminophen. You may not be able to take aspirin or nonsteroidal anti-inflammatory drugs (NSAIDs). These may increase bruising and bleeding. […] Other pain management options. Talk with your provider about other ways to ease pain. You may find meditation, massage, or heat therapy helpful.

• #14 Ehlers-Danlos Syndrome | University Hospitals

  https://www.uhhospitals.org/health-information/health-and-wellness-library/article/diseases-and-conditions/ehlers-danlos-syndrome

  For people who have severe symptoms, surgery or other treatments may be needed. This can include surgery for a dislocated joint or a ruptured blood vessel. […] EDS is a lifelong disease. But you can take steps to prevent problems linked to EDS. Make sure you see your healthcare team for regular checkups and tests. Keep in mind that poor wound healing can delay recovery after dental and medical procedures. […] Living with a chronic disorder like EDS can be hard to handle. A support group can help you cope with the mental and physical problems of EDS. Talk with your healthcare team about support groups near you. Or reach out to the Ehlers-Danlos Society at www.ehlers-danlos.com.

• #15 Ehlers-Danlos Syndrome

  https://www.rwjbh.org/treatment-care/heart-and-vascular-care/diseases-conditions/ehler-s-danlos-syndrome/

  There are several treatment options for EDS. Most options would fall under making certain lifestyle changes and medications. Treatment options include lifestyle changes, medications, and medical and surgical procedures. […] Avoid contact sports. […] Exercise under the directions of your doctor. […] Use sunscreen to protect the skin. […] Avoid harsh soaps that may overdry the skin or cause allergic reactions. […] Use assistive devices to minimize pressure on your joints. […] Make and keep appointments to see your doctor for routine check-ups and follow-up tests. […] ACE inhibitors will help blood vessels relax and open up, leading to a lower blood pressure. […] Angiotensin II receptor blockers will help blood vessels open up, leading to a lower blood pressure. […] Beta blockers will help reduce your blood pressure. […] Ehlers-Danlos Syndrome Treatment Care offered at these locations in your neighborhood.

• #16 Ehlers-Danlos Syndrome Treatment in Pomona, CA | Neurology Services

  https://www.casacolina.org/programs-services/ehlers-danlos-syndromes/

  If you or a loved one has already been diagnosed with an EDS or HSD, you probably know how hard it is to find clinicians with experience treating these conditions. […] Once a diagnosis is confirmed, our physician specialist will work with your primary care doctor to develop a comprehensive, therapy-based treatment plan to alleviate your symptoms and improve your quality of life. […] Casa Colina staff will also coordinate annual follow-ups to ensure your treatment plan which will likely include physical therapy and occupational therapy is continuing to work for you. […] Casa Colina offers a dedicated, comprehensive EDS program, including specially trained therapists who work with EDS patients on a regular basis. […] Our EDS therapy team will tailor your treatment plan to your unique condition, employing safe, effective exercises such as light weight training, isometric holds, and the option for aquatic therapy.

• #17 Ehlers-Danlos Syndrome (EDS) | Manhattan Pain Medicine, PLLC

  https://www.manhattanpainmedicine.com/conditions/ehlers-danlos-syndrome-eds/

  Utilizing medications and physical therapy to protect joints and prevent injuries is a common approach. Joint protection and injury prevention are key for overall well-being in individuals with EDS. […] A holistic approach involving physical therapy, cognitive-behavioral therapy, medication, surgery, and physiotherapy can be effective. Tailored exercise regimens focusing on joint mobility and proprioception are beneficial. […] These measures, while not preventing EDS entirely due to its genetic nature, significantly contribute to symptom management, complication reduction, and overall well-being for individuals with EDS. […] Understanding these interrelated conditions is fundamental for holistic care in managing EDS effectively and improving the quality of life for affected individuals.

• #18 A Survey of Patients with Ehlers Danlos Syndrome and Their Interest in Multidisciplinary Care – ACR Meeting Abstracts

  https://acrabstracts.org/abstract/a-survey-of-patients-with-ehlers-danlos-syndrome-and-their-interest-in-multidisciplinary-care/

  Respondents reported interest in pain management (84%), physical and occupational therapy (84%), rheumatology (82%), and cardiology (81%) as part of a hypothetical multidisciplinary clinic for EDS. […] Patients with EDS are interested in multidisciplinary care with a musculoskeletal focus and are willing to travel to obtain care. […] This represents a unique opportunity to bolster rheumatology involvement in specialized multidisciplinary care for patients with EDS, that can address their specific needs and provide coordinated care.

• #19 Caring for Someone with EDS or HSD – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/caring-for-someone-with-eds/

  Two-way communication is crucial. This requires being honest with and listening carefully to each other. […] If needed, a professional counselor can help you both increase your skills to have these important, honest conversations. […] While it is necessary to talk clearly about EDS and HSD, it is equally necessary to set times when it is not discussed. […] Having open, frequent communication between you and your loved one will help you be a better Caregiver and both of you will feel better understood and supported. […] Being a Caregiver can be hard work and it is perfectly normal for you to have feelings like anxiety, anger, grief, or guilt. […] While it is normal to have a variety of emotions, you and your loved one need to make sure your feelings are not negatively affecting each other.

• #19 Caring for Someone with EDS or HSD – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/caring-for-someone-with-eds/

  Caregivers are special members of our Ehlers-Danlos syndromes (EDS) and hypermobile spectrum disorders (HSD) families. Being a Caregiver is a demonstration of love and loyalty. You may be a parent, spouse, or child, or have another special relationship with a person who has a type of EDS or HSD who needs your care. […] Most of us never got training in being a Caregiver. You may believe a Caregiver needs to be a medical expert who knows all, a superhero who can do all, and a saint who can always be cheerful. However, Caregivers are human with all the skills, emotions, and experiences that entails. You have the ability to be the Caregiver your loved one needs. […] But how do you care for someone with EDS or HSD and care for yourself too? […] Learning all you can about your loved ones condition will help you both. It is also important to learn about how their condition affects them.

• #20 Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP

  https://www.aafp.org/pubs/afp/issues/2021/0415/p481.html

  Educating patients about lifestyle modifications, management options, and expectations is one of the most important interventions. […] The complexity of hypermobile EDS/hypermobility spectrum disorders and the lack of familiarity physicians may have can lead them to ignore or be skeptical of patients’ experiences with their EDS conditions, possibly having lasting negative impacts on patients. […] More research is needed, but three small studies of a multidisciplinary approach that includes physical, occupational, and cognitive behavior therapy have shown reduced anxiety, depression, catastrophizing, and kinesiophobia (fear of pain due to movement), with improved physical function and self-efficacy in treated patients.

• #21 Resource utilization and multidisciplinary care needs for patients with Ehlers–Danlos syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC9651604/

  EhlersDanlos syndrome (EDS) represents a family of heritable connective tissue disorders with overlapping phenotypic features, frequently including joint hypermobility, tissue fragility, and skin hyperextensibility. […] The many comorbidities lead to high disease burden, which requires greater healthcare utilization. […] Many respondents (67%) reported their medical care needs are not being met, and 87% reported interest in a multidisciplinary clinic for EDS with the most interest in pain management, physical and occupational therapy, and rheumatology. […] Understanding healthcare utilization and needs of those with EDS can provide the foundation for improved care for those with EDS through a coordinated multidisciplinary care model. […] Those with EhlersDanlos syndrome (EDS) have many comorbid symptoms across multiple body systems. We surveyed patients with EDS and found they are high utilizers of healthcare, but their medical needs are not being met and they are interested in multidisciplinary care to meet their healthcare needs.

• #21 Resource utilization and multidisciplinary care needs for patients with Ehlers–Danlos syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC9651604/

  To address the many comorbidities and high disease burden in those with EDS, multidisciplinary care has been proposed to help facilitate coordination of care, maximize treatment, and reduce medical visits. […] The objective of this study was to (1) characterize what specialties diagnosis patients with EDS, (2) determine healthcare utilization by adults and minors with EDS, (3) determine multidisciplinary care interest for those with EDS, and (4) identify specific needs for multidisciplinary care. […] Respondents overwhelmingly noted that their needs are not being met for themselves and their children, which may be due to the experienced burden of selfcare, selfadvocacy, and care for other family members in the home with EDS/HSD, particularly in context of nonintegrated care. […] Multidisciplinary care is clearly the goal for chronic, complex medical conditions, and most respondents are interested in a multidisciplinary clinic for care and management of EDS/HSD.

• #22 Ehlers-Danlos Program Helps Us Better Meet Patient Needs

  https://consultqd.clevelandclinic.org/ehlers-danlos-program-helps-us-better-meet-patient-needs

  Identifying EDS is a necessary first step for optimizing patient outcomes. […] In 2019, Cleveland Clinic started a care program to give patients with EDS a medical home, where they can be assessed, educated about EDS and referred for physical therapy. The program also coordinates with orthopaedic surgery, cardiology, physical therapy, gastroenterology, neurology and vascular medicine so patients can more easily have their EDS-associated conditions addressed by specialists who understand the syndromes. […] Since starting the EDS program at Cleveland Clinic, we have helped hundreds of patients get the coordinated care they need to manage their chronic condition. Our services include: Coordinated care with a broad network of providers who can address issues around hypermobility, Access to vascular medicine specialists for patients with vascular complications such as aneurysms or dissections, Access to Orthopaedics for patients with dislocations, Access to pain psychology experts for management of chronic pain and fatigue, Access to Cardiology and Neurology for help with dysautonomia, Physical therapists who are knowledgeable about movement- and pacing-related needs of patients with hypermobility.

• #23 Considerations for lactation with Ehlers-Danlos syndrome: a narrative review | International Breastfeeding Journal | Full Text

  https://internationalbreastfeedingjournal.biomedcentral.com/articles/10.1186/s13006-021-00442-9

  Techniques to reinforce appropriate posture and ergonomics can also address the difficulties for mothers who suffer joint strain due to lack of body awareness caused by the known proprioceptive abnormalities that may present in EDS. […] Establishing relationships with other care providers to create a health care team that includes ideally a physiotherapist and a nutritionist is important for the total care of these patients. […] It is also important to note that EDS patients will often find positions such as tucking in their knees or crossing their legs provide temporary relief for muscle fatigue. […] Helping a new EDS mother with finding adequate resources to manage fatigue is especially important. […] These resources can include neighbors, friends, church members, and family who all want to help make life easier for the new mother as well as providing the additional assistance needed to promote successful lactation.

• #23 Considerations for lactation with Ehlers-Danlos syndrome: a narrative review | International Breastfeeding Journal | Full Text

  https://internationalbreastfeedingjournal.biomedcentral.com/articles/10.1186/s13006-021-00442-9

  Ehlers-Danlos syndrome (EDS) is a rare genetic connective tissue condition that is poorly understood in relation to lactation. […] EDS, a disorder that impacts connective tissue, is characterized by skin extensibility, joint hypermobility, and fragile tissue which can affect every organ and body system leading to complications during pregnancy, delivery, and the postpartum period. […] Traits of this disease can cause mild to severe physiologic and functional obstacles during lactation. […] Unfortunately, there is little clinical evidence and minimal guidance for lactation management, and providers may feel uncomfortable and hesitant to address these concerns with patients due to a lack of readily available resources on the subject and inexperience with such patients. […] This narrative review describes and discusses the types of EDS, identifying symptoms, considerations, and precautions for care providers to implement during lactation and breastfeeding.

• #24 Ehlers-Danlos syndromes: Overview of the management – UpToDate

  https://www.uptodate.com/contents/ehlers-danlos-syndromes-overview-of-the-management

  Ehlers-Danlos syndrome (EDS) is the term used for a group of genetic disorders of connective tissue that are characterized by skin hyperextensibility, joint hypermobility, and/or tissue fragility. There are no medical treatments that can reverse or „cure” EDS. Therefore, management of EDS emphasizes patient and clinician education for the prevention and early recognition of injuries and complications. Patients with specific clinical manifestations may benefit from targeted interventions (eg, treatment of diffuse musculoskeletal pain). In addition, patients with certain forms of EDS require monitoring for potential complications (eg, arterial and valvular heart disease). […] This topic presents an overview of the approach to the management, monitoring, and prognosis of patients with EDS. This information can help primary care providers and other non-EDS specialists to support and educate patients with EDS and to coordinate care and referrals to appropriate specialists, depending upon the type and severity of EDS. Patients with EDS should be managed in collaboration with a relevant expert in clinical genetics or a provider with special expertise in EDS (ie, a „care team”).

• #25 Developing Your Care Team – The VEDS Movement

  https://thevedsmovement.org/what-to-expect/vascular-ehlers-danlos-syndrome-treatment-and-management/developing-your-care-team/

  For general management, individuals with Vascular Ehlers-Danlos Syndrome (VEDS) should always have a general practitioner who manages most of their day-to-day care. Care is local. The primary care physician should be in communication with a care team, some members of which may be at a major institution. Depending on your condition, several specialties should be included. For VEDS, close association to a vascular surgeon, general surgeon, gastrointestinal physician, and geneticist at a major institution is critical. It is important that the providers communicate with each other to provide integration of care. […] In selecting practitioners for the Care Team, it is important to define and explain the role of the primary care physician for a person with VEDS. They should be willing to: […] provide care and management to high risk patients with a chronic and progressive condition

• #26 Ehlers-Danlos Syndrome + Natural Ways to Help Symptoms – Dr. Axe

  https://draxe.com/health/ehlers-danlos-syndrome/

  For people with most forms of EDS, injury, invasive procedures such as surgery, and traumatic physical experiences such as childbirth can be dangerous. […] Consider these tips to avoid some of the possible complications that come with stress on your joints, tissue, bones and blood vessels. […] EDS carries many risks for the health and strength of your skin. […] You can help prevent skin breakage, protect it from damage and potentially speed wound healing by using sunscreen daily, wearing protective bandages on exposed skin, and massaging your skin with coconut oil. […] Many people with EDS have more than just physical symptoms. […] You may wish to try some of the following to improve your emotional, social and mental health support: Try cognitive behavioral therapy, Build a support system, Get high-quality rest, Talk with others who understand EDS.

• #27 Ehlers-Danlos syndrome: Diagnosing and treating an ‘invisible’ disease | Men’s Health | Women’s Health | UT Southwestern Medical Center

  https://utswmed.org/medblog/ehlers-danlos-diagnosis-care/

  It’s important to inform other medical providers about your condition especially if you’re pregnant or having surgery. Your care team will need to factor EDS into your recovery, which might take longer. […] We provide patients with the medical and emotional perspective they need to understand that they have a very real condition. And we provide the expert treatment it takes for them to start feeling better.

• #28 Considerations for lactation with Ehlers-Danlos syndrome: a narrative review | International Breastfeeding Journal | Full Text

  https://internationalbreastfeedingjournal.biomedcentral.com/articles/10.1186/s13006-021-00442-9

  For the healthcare provider, identifying characteristics of EDS can improve the management of lactation challenges. […] Such obstacles can generate impediments to breastfeeding and create unique challenges for breastfeeding mothers with EDS. […] Unfortunately, new mothers with these symptoms may have them overlooked or not addressed, impacting a mothers ability to meet her breastfeeding intentions. […] While there are some published research manuscripts on EDS and pregnancy, there is a lack of information regarding breastfeeding and lactation. […] Additional research is needed to help guide EDS mothers to achieve their breastfeeding intentions. […] Currently, there are 13 recognized subtypes, mainly categorized by key physical determinants that capture the distinctive signs and symptoms of each phenotype.

• #29 Self management Archives – The Ehlers-Danlos Support UK

  https://www.ehlers-danlos.org/what-is-eds/information-on-eds/self-management/

  Self-management is a key part of EDS (Ehlers-Danlos syndromes) and HSD (hypermobility spectrum disorders). […] Pacing, physiotherapy exercises, dietary changes and good sleep hygiene are all examples of things you can begin to take on yourself, with time, practice and support to contribute to managing your EDS and HSD. […] EDS cannot be 'cured’ but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing.

• #30 Nursing Care Plan For Ehlers Danlos Syndrome – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-ehlers-danlos-syndrome/

  In implementing this care plan, nurses play a crucial role in improving the overall well-being of patients with EDS. They offer not only medical support but also emotional and educational assistance, helping patients and their families better understand and manage this lifelong condition. […] By focusing on symptom management, prevention, and holistic care, nurses can empower individuals with EDS to lead as healthy and fulfilling lives as possible.

• #30 Nursing Care Plan For Ehlers Danlos Syndrome – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-ehlers-danlos-syndrome/

  Creating nursing interventions for Ehlers-Danlos Syndrome (EDS) is an essential part of patient care. These interventions should be tailored to the patients specific symptoms and needs. […] These nursing interventions should be customized to the patients unique EDS presentation and symptoms. Regular assessments and ongoing communication with the healthcare team are essential to provide the best care for individuals with EDS. […] In conclusion, the nursing care plan for Ehlers-Danlos Syndrome (EDS) emphasizes the importance of providing comprehensive and individualized care to patients with this complex and challenging condition. […] Effective care for individuals with EDS necessitates a multidisciplinary approach, with healthcare professionals from various fields working together to address the unique challenges presented by this condition.

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