Ehlers-Danlos syndrome (EDS) is the name given to a group of genetic disorders affecting connective tissue, whose role is to stabilize joints, blood vessels, skin, and other tissues.

No cure exists for EDS, and treatments focus on managing symptoms and preventing complications. Because symptoms differ by type of EDS, management strategies vary.

Physiotherapy

Physiotherapy can help strengthen muscles and provide stability to joints. Physical exercises can reduce pain and lower the risk of dislocations. The application of heat or cold, massages, ultrasound, electrical stimulation, and acupuncture can also help to relieve pain.

Assistive devices

Braces can improve the stability of the knees and ankles. Ring splints or wrist and thumb braces can help when the stability of small joints is affected.

Scooters and wheelchairs can lessen the stress on lower-extremity joints and can aid mobility.

Pain medication

Pain medication should be tailored to individual symptoms. Patients with mild to moderate pain can take medication as needed. Patients with severe and continuous pain are likely to benefit from regular dosing.

Nonsteroidal anti-inflammatory drugs (NSAIDs), tricyclic antidepressants, and serotonin/norepinephrine receptor inhibitors (SNRIs) are commonly given to EDS patients. Muscle relaxants and magnesium can also relieve muscle spasms. For severe pain, opioids may be prescribed.

Surgery

Orthopedic surgery may be needed to repair joints damaged by repeat dislocations. Because EDS patients are at a higher risk of surgical complications, such as excessive bleeding, sudden tears in blood vessels, and problems with wound healing, surgery is only recommended when physiotherapy and the use of braces fail to provide adequate relief.

Treatments to maintain bone density

Calcium and vitamin D supplements can help to increase bone density. Weight-bearing exercises also help in maintaining mineral bone density and muscle tone. A physiotherapist can advise patients as to exercises that are safe and recommended for them.

Treatments for gastrointestinal problems

Gastritis (inflammation of the lining of the stomach) and gastroesophageal reflux disease (GERD) can be treated with proton-pump inhibitors (PPIs) and H2-blockers.

Irritable bowel syndrome is treated with dietary modifications or, as needed, with antidiarrheals, laxatives, and antispasmodics.

Treatments for cardiovascular disease

Low blood pressure can be treated with sodium supplementation and water to expand the blood volume or with electrolyte tablets. In some cases, treatment with beta-blockers or other medications may be necessary.

Treatment of dental problems

Looseness (laxity) of jaw joints is difficult to treat. In some cases, intra-oral devices may be helpful. Resting the jaw muscles by minimizing chewing and talking can also help. Muscle relaxants may provide pain relief.

Treatment of psychiatric problems

Depression is a common symptom in people with chronic pain. Psychological counseling or cognitive behavioral therapy may be beneficial. The use of antidepressants can also reduce psychiatric problems.

 

Last updated: Oct. 17, 2019

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.