Materiały źródłowe

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

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

  There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications. […] Your doctor may prescribe drugs to help you control: […] Pain. Over-the-counter pain relievers such as acetaminophen (Tylenol, others) ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) are the mainstay of treatment. Stronger medications are only prescribed for acute injuries. […] Blood pressure. Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low. […] Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist might also recommend specific braces to help prevent joint dislocations. […] Surgery may be recommended to repair joints damaged by repeated dislocations, or to repair ruptured areas in blood vessels and organs. However, the surgical wounds may not heal properly because the stitches may tear through the fragile tissues.

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

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

  Ehlers-Danlos syndrome is a genetic condition that makes your bodys connective tissue weaker than it should be. […] Theres no cure, but your healthcare provider will help you find treatments to manage your symptoms and prevent potentially dangerous complications. […] Your healthcare provider will suggest treatments for Ehlers-Danlos syndrome that help you manage your symptoms and prevent dangerous complications. Which treatments will work for you depends on which type of EDS you have and how your connective tissue is affected. […] Some common Ehlers-Danlos syndrome treatments include: Wearing sunscreen and using mild soaps to protect your skin. Physical therapy to strengthen the muscles around your joints. Wearing braces for extra joint support. […] Even if you have vascular Ehlers-Danlos syndrome, your healthcare provider will help you find a combination of treatments and lifestyle changes that help you lead a safe, healthy life. Talk to your provider about what to expect and which signs or symptoms of dangerous complications you should watch for.

• #3 Ehlers-Danlos syndromes

  https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

  There’s no specific treatment for EDS, but it’s possible to manage many of the symptoms with support and advice. […] People with EDS may also benefit from support from a number of different healthcare professionals. […] For example: a physiotherapist can teach you exercises to help strengthen your joints, avoid injuries and manage pain; an occupational therapist can help you manage daily activities and give advice on equipment that may help you; counselling and cognitive behavioural therapy (CBT) may be useful if you’re struggling to cope with long-term pain; for certain types of EDS, regular scans carried out in hospital can detect problems with internal organs; genetic counselling can help you learn more about the cause of your condition, how it’s inherited, and what the chances are of passing it on to your children. […] Your GP or consultant can refer you to these services.

• #4 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”).

• #5 Physical Therapy – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/physical-therapy/

  Physical therapists (also called physiotherapists or PTs) can help people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in many ways, depending on the type of pain and other symptoms they have. […] A physical therapist can: Prescribe appropriate exercises to reduce pain associated with joint instability, muscle spasms, strains, and sprains […] Apply gentle manual therapy to reduce pain and help with joint instability. […] A physical therapist can also suggest other helpful pain management strategies, such as: Heat, Ice, Electrotherapy (such as TENS), Supportive taping, Braces and splints, Mobility aids, Laser therapy, Ultrasound, Dry needling. […] Exercise is important for people with EDS and HSD because it improves muscle strength, which helps stabilize hypermobile joints.

• #6 Physical Therapy – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/physical-therapy/

  It is best to work with a physical therapist or exercise physiologist to determine the best exercises for you. […] Exercises that focus on movement control and strengthening the stabilizing muscles are generally suitable for people with EDS and HSD. […] A PT can teach you to stretch safely and effectively and to know your limits when stretching. […] A physical or occupational therapist can help by: Providing advice about how to prevent future episodes, Investigating the underlying cause(s) of the instability, Suggesting management strategies (such as exercises or support braces). […] Exercise is a vital part of managing EDS and HSD. […] A PT can teach you how to do exercises that are appropriate and beneficial for you. […] Your doctor and PT can advise you on physical activities that are suitable for you.

• #7 Ehlers-Danlos syndrome: A common but overlooked cause of chronic pain – Mayo Clinic Press

  https://mcpress.mayoclinic.org/living-well/ehlers-danlos-syndrome-a-common-but-overlooked-cause-of-chronic-pain/

  How is EDS treated? […] Its true that hEDS-HSD can be debilitating, and it can progress if you dont take the necessary steps to avoid injury and maintain function. But there is treatment that works! […] We recommend low-impact exercise such as swimming, bicycling, using an elliptical machine and walking. Other treatments that may be helpful include tai chi, meditation, heat therapy (like heating pads, warm baths), massage, acupuncture, transcutaneous electrical nerve stimulation (TENS), therapeutic kinesiology tape, dry needling and trigger point therapy. […] Topical medications are preferred over oral medications to avoid extra side effects. Optimizing mental health also is a crucial part of treatment for any cause of chronic pain. This can come in the form of cognitive behavioral therapy, pain neuroscience (recognizing how pain works in the body), or health and wellness coaching.

• #8 Ehlers–Danlos syndrome – Wikipedia

  https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

  A cure is not yet known, and treatment is supportive in nature. […] Physical therapy and bracing may help strengthen muscles and support joints. […] Several medications can help alleviate symptoms of EDS such as pain and blood pressure drugs, which reduce joint pain and complications caused by blood vessel weakness. […] No cure for type 1 EDS has been found, but a course of non-weight-bearing exercise can help with muscular tension, which can help correct some EDS symptoms. Anti-inflammatory drugs and lifestyle changes can help with joint pain. […] A physician may prescribe casting to stabilize joints. […] Physicians may also consult a physical and/or occupational therapist to help strengthen muscles and teach people how to properly use and preserve their joints. […] Aquatic therapy promotes muscular development and coordination.

• #9 Ehlers-Danlos syndrome: A common but overlooked cause of chronic pain – Mayo Clinic Press

  https://mcpress.mayoclinic.org/living-well/ehlers-danlos-syndrome-a-common-but-overlooked-cause-of-chronic-pain/

  But among all these possible treatments, the real cornerstone of EDS treatment is physical therapy and occupational therapy. The key is that these treatments are done with therapists who are experienced with EDS and hypermobility. Some types of physical therapy can be damaging to those with EDS if not done correctly. […] Patients of childbearing age should also understand there are increased risks with pregnancy and childbirth. The risks are rare but include bleeding, earlier onset of labor and rapid progression through labor. It is important to make your health care provider aware of your diagnosis and to have pelvic floor therapy during pregnancy. In doing so, you are more likely to have a typical term delivery without complications.

• #10 Occupational Therapy – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/occupational-therapy/

  Occupational therapists can be an integral part of the healthcare team for someone living with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD). […] Occupational therapists are practical problem-solvers who can help people with EDS and HSD increase participation, independence, and comfort in daily activities. […] Occupational therapists can help manage other symptoms and challenges, such as: Fatigue, Coordination, Rest and sleep, Handwriting, Joint protection, Motor planning, Pain management, Hand-eye coordination, Ergonomics, School-related difficulties, Differences in sensory processing, Play, Fine and gross motor skills. […] Occupational therapists can assist in many different areas, including: Driving and mobility, Shopping, Dressing, Managing finances, Personal grooming and hygiene, Managing medications, Sexual activities, Self-management of health, Meal preparation, Child care, Feeding/eating, Pet care, Participating in religious and spiritual activities. […] Occupational therapists can take continuing education courses in connective tissue disorders and joint hypermobility. EDS ECHO is an educational program for healthcare professionals to learn to better care for those living with EDS and HSD.

• #11 Table 6. [Classic Ehlers-Danlos Syndrome: Treatment of Manifestations]. – GeneReviews® – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK1244/table/eds.T.classic_ehlersdanlos_syndrome_trea/

  Joint pain analgesics […] Acetaminophen: 4,000 mg daily in 3-4 divided doses. NSAIDs, as tolerated by upper GI symptoms, for arthralgia, myalgia, secondary inflammatory conditions (e.g., bursitis, tendinitis, costochondritis, postdislocation pain). COX-2 inhibitors have similar efficacy to NSAIDS but may be better tolerated. Topical lidocaine (cream or patch) may be useful for localized pain. Topical capsaicin is of questionable utility but is safe. Tramadol w/acetaminophen NSAID or COX-2 inhibitor before resorting to other opioids (Nausea is the most common side effect.) Opioids for myofascial pain neuropathic pain; should be reserved after failing the above medications. Administer w/other analgesics to minimize total opioid requirements. Typically used chronically (or at least several months), the primary formulation should be long acting (e.g., sustained-release oxycodone or morphine or topical fentanyl patch) w/short-acting forms of the same drug as needed for breakthrough pain. Routine use of 2 daily doses of a short-acting form should prompt an increase in the long-acting dose or another adjustment to the pain regimen. Bruising is not a contraindication to NSAID therapy, but occasionally requires dose reduction or change to a COX-2 inhibitor. Those w/muscle hypotonia joint instability w/chronic pain may have to adjust lifestyle professional choices accordingly. Emotional support behavioral psychological therapy may help in developing acceptance coping skills. Long-term chronic pain may result in the need for mental health services.

• #12 Table 6. [Classic Ehlers-Danlos Syndrome: Treatment of Manifestations]. – GeneReviews® – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK1244/table/eds.T.classic_ehlersdanlos_syndrome_trea/

  Pain other pharmaceutical treatment options […] Serotonin/norepinephrine receptor inhibitors (SNRIs) (e.g., venlafaxine, desvenlafaxine, duloxetine, milnacipran) offer combined benefit for depression neuropathic pain. Venlafaxine may blood pressure a few points, which may be helpful for those w/neurally mediated hypotension. Some anti-seizure medications (e.g., gabapentin, pregabalin, topiramate, lamotrigine) have been used in cEDS, are effective for neuropathic pain, can be used in addition to tricyclic antidepressants /or SNRIs. All require gradual titration before reaching therapeutic levels. Gabapentin should be titrated as tolerated to at least 1,200 mg 3x per day before declaring failure, but dose is often limited by sedation /or GI side effects. Pregabalin, titrated to at least 300 mg divided 2-3x/day, tends to be better tolerated than gabapentin. Short courses of steroids can be very effective for controlling acute flares of pain assoc w/secondary inflammation. Classic EDS is not an intrinsically inflammatory condition, there is no role for chronic steroid use. Muscle relaxants in combination w/analgesics to treat myofascial spasm neuropathic pain. Limited by sedation; metaxalone may be least sedating. Muscle relaxants may joint instability by muscle tone. Magnesium (topical as Epsom salt baths or oral) may muscle spasm pain. No specific formulation or dosage is established as superior. Adverse effects (sedation, nausea, abdominal pain, diarrhea) are more common w/oral rather than topical supplementation. Tricyclic antidepressants are often effective for neuropathic pain, w/additional benefits of mild sedation (for those w/sleep disturbance) a little mood elevation. Typical doses are nortriptyline (25-150 mg) or trazadone (50-300 mg) every evening. Constipation, a common side effect, can be managed w/fluids, fiber, stool softeners, laxatives. For those w/diarrhea-predominant irritable bowel syndrome, the constipating effect may be therapeutic. Glucosamine chondroitin may help to prevent or treat osteoarthritis in the general population. These have not been studied specifically in cEDS but are not contraindicated. Cannabinoids such as dronabinol marijuana (where legal) may be helpful for several different types of pain. Benefits should be weighed against the potential for dependency /or psychoactive effects. Benzodiazepines may offer some short-term reduction in muscle spasm. Routine use of benzodiazepines is not recommended, because of the high risk of tolerance, dependency, addiction.

• #13 Table 6. [Classic Ehlers-Danlos Syndrome: Treatment of Manifestations]. – GeneReviews® – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK1244/table/eds.T.classic_ehlersdanlos_syndrome_trea/

  Classic Ehlers-Danlos Syndrome: Treatment of Manifestations […] Skin […] Dermal wounds should be closed w/o tension, preferably in 2 layers. Deep stitches should be applied generously. Cutaneous stitches should be left in place twice as long as usual, additional fixation of adjacent skin w/adhesive tape can help prevent stretching of the scar. Very young children w/pronounced skin fragility can wear protective pads or bandages over the forehead, knees, shins to avoid skin tears. Older children who are active can wear soccer pads or ski stockings w/shin padding during activities. […] Joint instability […] Braces are useful to improve joint stability. Orthopedist, rheumatologist, or physical therapist referral for knee or ankle braces as needed. Occupational therapist referral for ring splints (to stabilize interphalangeal joints) wrist or wrist thumb braces for small joint instability. A soft neck collar, if tolerated, may help w/neck pain headaches. Wheelchair or scooter as needed to decrease stress on lower-extremity joints. Wheelchair customizations (e.g., lightweight, motorized, seat pads, specialized wheels, wheel grasps) as needed to accommodate pelvic upper-extremity issues. A waterbed, adjustable air mattress, or viscoelastic foam mattress (/or pillow) may increase support for improved sleep quality less pain. Those w/hypotonia, joint instability, chronic pain may need to adapt lifestyle accordingly. Note: Surgical stabilization of joints may lead to disappointing, or only temporary, improvement.

• #14 Ehlers-Danlos Syndrome: Symptoms, Diagnosis, Treatment

  https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts

  Braces or other assistive devices, such as a wheelchair or scooter, to make getting around easier. […] Calcium and vitamin D supplements to help strengthen your bones. […] Over-the-counter drugs to help with joint pain. If those don’t help, your doctor may prescribe a stronger medication. […] Surgery to help repair joints is also an option. But because it comes with risks, your doctor will likely not suggest it unless other treatments haven’t helped.

• #15 Ehlers-Danlos syndrome (EDS) | Cedars-Sinai

  https://www.cedars-sinai.org/health-library/diseases-and-conditions/e/ehlers-danlos-syndrome-eds.html

  Because the condition is genetic, there is no cure for EDS. Treatment for EDS will focus on reducing stress to the aorta and other arteries, manage skeletal and joint difficulties and any pain associated with them. […] Medication to manage pain and high blood pressure or cholesterol levels are the most common forms of drug therapy. This may include beta blockers to slow the heartbeat and relax the heart muscle so that it can work more efficiently. Angiotensin II receptor blockers may also be prescribed to lower blood pressure. […] Physical therapy may also be prescribed if the patient has joints prone to dislocation. With physical therapy, patients can strengthen their joints and connective tissue and reduce their risk of injury. If injury due to dislocation occurs and there is damage to the joints, surgery may be needed. However, surgery for patients with EDS can be challenging because the joint tissue may not heal properly after the procedure. Therefore, endovascular therapies including stent grafts and coils are being increasingly used in severe vascular forms of EDS. […] The knowledgeable and highly trained staff at the Cedars-Sinai Heart Institute and the Medical Genetics Institute will work with each patient to determine the best treatment options.

• #16 Medications for Ehlers Danlos Syndrome Treatment | The EDS Clinic

  https://www.eds.clinic/articles/medications-for-ehlers-danlos-syndrome-treatment

  The best treatment for EDS focuses on managing symptoms. Physical therapy is vital for strengthening muscles and stabilizing joints. Pain management may involve NSAIDs, muscle relaxants, and, in some cases, low-dose opioids. Monitoring cardiovascular health is also crucial. […] No, EDS cannot be cured. However, symptoms can be managed, allowing many people to lead active lives. Treatment typically includes avoiding injury, using braces for joint stability, and addressing chronic pain and cardiovascular concerns. […] Edsivo (celiprolol) is a breakthrough treatment specifically for vascular EDS. The FDA has granted it Breakthrough Therapy designation for reducing the risk of arterial rupture in patients with a confirmed COL3A1 mutation. […] EDS cannot be reversed, but symptoms can be managed through physical therapy, dietary adjustments, and medications. These treatments can help improve function and quality of life.

• #17 Medications for Ehlers Danlos Syndrome Treatment | The EDS Clinic

  https://www.eds.clinic/articles/medications-for-ehlers-danlos-syndrome-treatment

  Common medications for POTS include beta-blockers (Propranolol, Bisoprolol) to control heart rate, Ivabradine for slowing heart rate, Fludrocortisone to increase blood volume, Midodrine for raising blood pressure, and Pyridostigmine for improving nerve function. Clonidine and Desmopressin may also be used in specific cases to manage symptoms.

• #18 Management and Treatment Options for Type 4 Ehlers-Danlos Syndrome – Discover Celiprolol

  https://discoverceliprolol.com/management-and-treatment-options-for-type-4-ehlers-danlos-syndrome/

  VEDS is one of the most severe forms of Ehlers-Danlos Syndrome (EDS), a group of genetic disorders that affect the body’s connective tissues. It is estimated to affect 1 in 50,000 to 1 in 200,000 people worldwide, with no known cure. However, there are several treatment options available to manage the symptoms and reduce the risk of complications. […] The first line of treatment for VEDS is medical management, which includes regular monitoring and screening for complications, such as arterial dissection, aneurysms, and organ rupture. Early detection and treatment of these complications are essential to prevent life-threatening consequences. […] Currently, there are no specific treatments or cures for VEDS. However, several experimental therapies are being investigated to address the underlying genetic defect and improve the outcomes of patients with VEDS. These include: Beta Blockers: This approach measures the value of long-term beta blocker treatment (celiprolol) to prevent vascular complications in EDS type IV within the DiSCOVER Celiprolol study.

• #19 Treatment for Ehlers-Danlos Syndrome | Neurological Surgery

  https://neurosurgery.weillcornell.org/condition/ehlers-danlos-syndrome-eds/treatment-ehlers-danlos-syndrome

  There is no specific cure for Ehlers-Danlos Syndrome (EDS). Treatment and management are focused on preventing serious complications and pain relief. Conservative treatment, such as physical therapy and RICE (rest, ice, compression, elevation) is preferable to surgery since EDS can lead to less-predictable healing and excessive bleeding. […] Treatment for Ehlers-Danlos Syndrome will depend upon the severity of the condition and its complications, as well as on the health and age of the patient. Surgery can improve quality of life, and a medical team will recommend surgery for life-altering EDS issues not addressed by conservative treatment. Minimally invasive surgical techniques are preferable. […] Surgical joint stabilization and nerve-release procedures may be the only reasonable option for those with certain neurological and spinal manifestations of Ehlers-Danlos Syndrome, such as those who suffer from debilitating pain or complications from spine instability, degenerative disc disease, and malformation of the spine or ribs, which can affect heart and lung function.

• #20 Treatment for Ehlers-Danlos Syndrome | Neurological Surgery

  https://neurosurgery.weillcornell.org/condition/ehlers-danlos-syndrome-eds/treatment-ehlers-danlos-syndrome

  Minimally invasive lumbar fusions do not require the large incision or the muscle retraction typically used in conventional fusions. […] Recent advances in spinal-fusion surgery include the use of microscopes and tubes to minimize tissue trauma, as well as the introduction of computerized image guidance, also called surgical navigation. […] Surgery to treat problems caused by Ehlers-Danlos Syndrome is best performed at a major spine center with doctors trained and experienced in the most up-to-date, minimally invasive techniques. Minimally invasive surgery means a quick recovery, less pain, and less scarring. […] The neurosurgical team at Och Spine at NewYork-Presbyterian at the Weill Cornell Center for Comprehensive Spine Care are world leaders in minimal-access surgery to stop the progression of issues caused by Ehlers-Danlos Syndrome, such as spinal pressure, pain, nerve damage, and restriction of lung or heart function.

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

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

  The correct diagnosis for patients with Ehlers-Danlos syndrome (EDS) is critical and must be determined, if possible. […] Once a diagnosis of EDS is made, preventative measures should be taken. Wearing a MedicAlert bracelet identifying a patient with EDS can help in case of a life-threatening emergency, such as arterial rupture or carotid-cavernous fistula. […] In patients with EDS, in the event of skin lacerations or other injuries, take extreme care with the use of suture closure. Seriously consider alternatives to sutures, such as wound glues and adhesive strips. […] Monitor patients for scoliosis. Instruct them to avoid excessive or repetitive lifting and other activities that produce undue strain or stress on their already hypermobile joints. Recommend low-resistance exercise to help increase muscle tone and stabilize loose joints. Physical therapy guided by a therapist who is experienced in working with patients with connective-tissue abnormalities and joint dysfunction can be very helpful in the management of long-term health.

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

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

  High-dose (1-4 g/d) ascorbic acid (vitamin C) therapy has been tried and, in theory, has a potential effect. Clinical studies suggest that wound healing, even in patients who are not deficient in vitamin C, can improve with supplementation above the recommended daily allowance. […] Recombinant factor VIIa has been used to help control surgical bleeding, but experience is limited and the usual surgical precautions for patients with EDS should be followed. […] A Swedish report, by Yekkalam et al, found that temporomandibular disorders in study patients with hypermobility- or classical-type EDS were most commonly treated with bite-splint therapy, counseling, jaw exercises, occlusal adjustment, and orthodontic treatment. […] Surgery may be indicated to correct fractures and stabilize dislocated joints. Surgical teams caring for patients with Ehlers-Danlos syndrome (EDS) need to be informed of any history of vascular problems or bleeding concerns.

• #23 Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10472575/

  There is no known cure for EDS or HSD, and they are often difficult to diagnose since clinical presentation may vary greatly between patients and there is a lack of specific genetic tests. […] EDS may be managed with a variety of treatment options including physical therapy, nonsteroidal anti-inflammatory drugs, acetaminophen, opioid medications, and surgery, as well as non-traditional or complementary modalities including acupuncture and massage. […] It has been suggested that psychological approaches, particularly to address chronic pain observed among individuals with EDS, may be helpful for recovery and rehabilitation. […] Despite these promising outcomes, it has been suggested that more research is needed on relevant psychosocial strategies for individuals with EDS. […] Rombaut and colleagues also emphasized the need for evidence-based recommendations for the optimal management of EDS, which includes psychological follow-up.

• #24 Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10472575/

  Overall, our study aims to examine the nature and extent of the current evidence on psychological interventions for individuals with EDS and HSD, identifying any gaps in research and providing suggestions for future research areas. […] CBT is a form of psychotherapy that is commonly used to address pain management, disability, and other mental health challenges in individuals with chronic illness by providing the patient with tools to identify and cope with these challenges. […] The psychological aspect consisted of psychotherapy (individual and group) for the patient and psychoeducational training for parents. […] Psychological interventions included self-management of pain and stress (e.g. relaxation techniques) and coping self-statements during distress. […] ACT is used to treat chronic pain and is a promising alternative for those who do not respond to CBT.

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

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

  Preferential use of staples or tape (rather than stitches) for wound closure should be strongly considered. […] A study by Larson et al indicated that patients with hypermobility-type EDS suffering from femoroacetabular impingement (FAI) and extreme capsular laxity (soft-tissue hip instability) can be effectively treated with capsular plication, arthroscopic correction of FAI, and labral preservation, without the occurrence of iatrogenic dislocations. […] Consultation with a dentist is necessary. Patients with connective-tissue disorders must practice meticulous dental care, which cannot be neglected. […] Comprehensive, accurate genetic counseling is one of the most critical issues in the treatment of patients with EDS. […] Provide referrals for mental health support with a psychologist and/or psychiatrist to discuss with the patient the impact of living with a chronic illness and the toll of daily life limitations. […] 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.

• #26 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.

• #27 Treating Hypermobile Ehlers-Danlos Syndrome with Lifestyle Modifications: Alpenglow Pain & Wellness: Board Certified Interventional Pain Management Physicians

  https://www.alpenglowpain.com/blog/treating-hypermobile-ehlers-danlos-syndrome-with-lifestyle-modifications

  It has become increasingly clear that people living with hypermobile Ehlers-Danlos syndrome (EDS) need specialized care, treatment, and lifestyle modifications. […] As part of your EDS treatment plan, Dr. Renk and Dr. Calor often recommend specific lifestyle modifications to help you function with less pain and negative physical impact. […] In combination with other treatment techniques like physical therapy, massage, dietary supplementation, safe medications, and procedures, lifestyle changes can significantly improve your wellness and quality of life. […] Dr. Renk and Dr. Calor diagnosis EDS and work with their patients to develop customized treatment plans. […] As part of your hypermobile EDS treatment, Dr. Renk and Dr. Calor discuss lifestyle modifications you should make as you live with this condition.

• #28 Treating Hypermobile Ehlers-Danlos Syndrome with Lifestyle Modifications: Alpenglow Pain & Wellness: Board Certified Interventional Pain Management Physicians

  https://www.alpenglowpain.com/blog/treating-hypermobile-ehlers-danlos-syndrome-with-lifestyle-modifications

  Dr. Renk and Dr. Calor can recommend exclusion diets that allow you to learn more about your trigger foods while still maintaining good nutrition. […] You might need to adjust your activity plan, so you’re keeping your muscles strong without triggering pain or putting yourself at risk for joint dislocation or injury. […] It’s important to develop good habits around posture. […] If you struggle with insomnia and sleep habits, improved sleep hygiene and bedtime routines may help you rest better through the night, more effectively recharging your energy for the next day. […] Dr. Renk and Dr. Calor helps you connect with specialists if you need to expand your care team to include mental health or other treatment modalities. […] For the comprehensive support you need to modify your lifestyle so you can stay healthy and well when living with EDS, contact Dr. Renk and Dr. Calor at Alpenglow Pain Wellness.

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

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

  Management of musculoskeletal complaints includes conservative treatments such as physical activity, acetaminophen and nonsteroidal anti-inflammatory drugs, heat and/or cold application, improved ergonomics and posture, relaxation techniques, massage, hydrotherapy, and joint stabilization techniques with bracing and/or taping. […] Educating patients about lifestyle modifications, management options, and expectations is one of the most important interventions. Encouraging the optimization of sleep, joint protection through the proper amount of regular physical exercise (low impact and low resistance), weight control, avoidance of substance use (e.g., alcohol, nicotine), and the consumption of a healthy diet can decrease pain, injuries, and fatigue and support mobility and functionality. […] 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.

• #30 Newly Diagnosed: Treatment Strategies for Ehlers-Danlos Syndrome | Ehlers-Danlos NewsEnvelope icon

  https://ehlersdanlosnews.com/newly-diagnosed-treatment-strategies-for-ehlers-danlos-syndrome/

  While Ehlers-Danlos syndrome (EDS) has no cure, nor are any disease-modifying therapies approved yet, there are therapeutic approaches that can help to ease symptoms and improve quality of life. […] Several experimental treatments are also currently in clinical trials that could prove beneficial for EDS patients. […] In addition to medications to help control specific symptoms, several non-drug approaches may be used to help manage the condition and improve patients’ quality of life. […] Apart from treatment options currently available to manage the symptoms of EDS, several experimental treatments are also in the pipeline. These include an investigational topical gel called Excellagen and a type of regenerative medicine called prolotherapy.

• #31 Reddit – The heart of the internet

  https://www.reddit.com/r/eds/comments/1auvlpq/eds_treatments_conventional_and_experimental/

  My girlfriend (29) has EDS and experiences significant pain. […] I’ve come across experimental treatments such as platelet-rich plasma, prolotherapy and stem cell therapy. Personally, I believe platelet-rich plasma is better than prolotherapy, while stem cell therapy is harder to get. […] I’ve also read about supplements (e.g., calcium, carnitine, Q10, glucosamine, etc.) being suggested as effective treatments for EDS. […] Finally, I’m interested in learning about other preventive measures and pain relief methods (e.g., TENS, heating pad, kinesiology tape, etc.).

• #32 Ehlers-Danlos Syndrome Symptoms, Diagnosis, And Treatment Options | CHARM

  https://charmaustin.com/ehlers-danlos-syndrome-eds/

  The joint and musculoskeletal pain that accompanies EDS may be improved with medication, with limitations due to addiction and side effects inherent in chronic use. […] The excessive collagen tissue fragility and elasticity present in the individual with EDS can create many challenges with typical joint and sports-related surgical procedures. […] Prolotherapy is a treatment option that has been proven for over 80 years to strengthen ligament weakness, improve the stability of hypermobile joints, and generally reduce pain. […] Platelet Rich Plasma (PRP) is a more advanced and well-known form of a technique known as Prolotherapy. […] Bone Marrow Aspirate Concentration (BMAC) is derived from the stem cells and growth factors present in the Bone Marrow to produce a sustained release of growth factors which help to stimulate the healing process even more powerfully than PRP alone.

• #33 Ehlers-Danlos Syndrome Symptoms, Diagnosis, And Treatment Options | CHARM

  https://charmaustin.com/ehlers-danlos-syndrome-eds/

  Regenerative Medicine using Dextrose Prolotherapy, Platelet Rich Plasma, and Bone Marrow Aspiration Concentration is proving to reliably and cost-effectively treat joint and musculoskeletal pain in those with sports-related injuries, degenerative joint conditions, and EDS population through improving the connective tissue stability and integrity. […] Once joint integrity has been improved with the use of Regenerative Medicine techniques, the individual with Ehlers-Danlos Syndrome may see increased success with physical therapy focused on improving neuromuscular control as well as a greater tolerance to generalized conditioning and fitness program.

• #34 PRP therapy and hypermobile Ehlers-Danlos syndrome

  https://jointrehab.com/prp-therapy-in-treating-hypermobile-ehlers-danlos-syndrome/

  While research is still exploring the role of regenerative injection therapies such as Platelet Rich Plasma and Stem Cell therapy, empirically and clinically, these treatments have demonstrated good results in relieving the symptoms of painful joint instability and hypermobility in patients with hEDS. […] PRP can help hEDS because the platelets contain growth factors crucial for the creation of collagen, fibrocartilage and hyaline cartilage. […] The platelets contain healing agents, or “growth factors” that help strengthen and tighten ligaments and tendons and rebuild cartilage.

• #35 Vascular Ehlers-Danlos Treatment and Management-The VEDS Movement

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

  It is recommended that those with Vascular Ehlers-Danlos Syndrome (VEDS) follow these treatment and management recommendations: […] Affected individuals should seek immediate medical attention for sudden and unexplained pain. Vascular EDS is considered the most serious form of Ehlers-Danlos Syndrome due to the possibility of arterial or organ rupture. […] In general, medical care for people with VEDS occurs in their local community and requires a primary care physician who can coordinate needs with other specialists. […] Have surgery when recommended. In general, surgical procedures are more likely to be successful when the treating physician is aware of the diagnosis of VEDS and its associated tissue fragility. […] Manage pregnancy appropriately. Pregnant women with VEDS should be followed in a high-risk obstetric program.

• #36 Ehlers-Danlos | Condition | UT Southwestern Medical Center

  https://utswmed.org/conditions-treatments/ehlers-danlos/

  There is no cure for Ehlers-Danlos syndrome, but doctors can treat the individual conditions associated with the disorder. Doctors may recommend physical therapy to strengthen muscles or prescribe medication for joint or muscle pain. In rare cases, surgery may be necessary to repair joints that have been dislocated several times. […] Most women with Ehlers-Danlos syndrome can have successful pregnancies, but a doctor should monitor them throughout their pregnancies for signs of complications.

• #37 What is EDS? – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/what-is-eds/

  There are no disease-specific treatments for any type of EDS, so EDS is managed by addressing each person’s symptoms. The Ehlers-Danlos syndromes can cause a variety of symptoms in different areas of the body. Therefore, people with a type of EDS often require multiple providers in different specialties to manage their care. Even within the same type of EDS, two people may have very different symptoms and respond differently to different management strategies. Each person should work with their care team to develop a care plan that meets their individual needs.

• #38 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. […] The next step is connecting patients with EDS-experienced rheumatologists and other specialists who can help them navigate challenges. […] 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.

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

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

  In addition to treating physiological conditions associated with EDS, we understand the importance of helping patients manage social and psychological effects. […] This year we will begin offering shared medical appointments (SMAs) that will enable us to educate newly diagnosed patients efficiently and effectively while connecting them to others with similar experiences. […] One of the most important things we do is let them know that their experiences are not all in their head. In some cases, they have been told there’s nothing wrong with them. We are able to validate their experiences and offer tools to help them manage and to offer hope that they can feel better.

• #40

  https://link.springer.com/article/10.1007/s42399-022-01218-w

  Despite recent advances in genetic diagnosis, testing and research, there is a significant gap in care for patients with hEDS/HSD. To date, there are no specific medical or genetic therapies available to care for patients with any type of EDS. […] The EDS Clinic at Mayo Clinic in Florida was started in November 2019 to provide diagnosis and specialized care in the hope of advancing the science of these disorders. […] The EDS Clinic is a tertiary care model rather than a primary care model. The clinical pathways designed were intentional to provide accessibility to as many patients as possible and contribute to the overall body of research. For each patient, the clinical team completed a full diagnostic work-up, assisted the patient in creating a treatment plan, and transitioned the patient to their local primary care provider for ongoing care.

• #41

  https://link.springer.com/article/10.1007/s42399-022-01218-w

  Ultimately, the Clinic focuses on individualizing care at the patient level. This is particularly important with such a broad and multi-system condition. To this end, treatment for patients includes the primary goal of improving quality of life by focusing on improving physical function with strategies for maintenance with physical and occupational therapists experienced with hypermobility, symptom control and mental wellness. […] The final visit was held by telehealth. This appointment served to summarize and integrate all previous referrals and diagnostic testing and outline treatment recommendations for continued care with the primary care provider, which was often not at our institution. […] The workflow of the EDS Clinic was specifically designed to allow comprehensive assessments, testing and follow-up.

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