Ehlers-Danlos Syndrome - Treatments

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How are Ehlers-Danlos syndromes treated?

Ehlers-Danlos syndromes are treated according to the particular manifestations present in a given individual.

Skin protection (from injury of trauma and sun, etc.) is critical. Wounds must be tended with great care and infections treated and prevented. Suturing can be difficult as the skin can be extremely fragile.

Joint injury must be avoided. Occasionally, bracing may be necessary to maintain joint stability. Exercises that strengthen the muscles that support the joints can help to minimize joint injury. Contact sports and activities involving joint impact should be avoided.

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Comment from: BC Lady, 55-64 Female (Patient) Published: November 05

As a child-teenager my knees easily dislocated, so I couldn't do contact or field sports, skiing, or gymnastics. Later my shoulders would easily pop too. My skin is very soft and stretchy, cuts bleed easily, and scars do form; eventually a dermatologist diagnosed me with Ehlers Danlos syndrome when I was about 45. I've had major/minor orthopedic surgery on my knees every decade starting in my 20s; both knees have 6 inch scars. I started strength training at 36 and have kept it up all these years (I'm a very fit 60 plus lady now. The gym workouts made a big difference to my quality of life; having strong muscles surrounding the patella and shoulder joints meant I no longer dislocated anything. Stronger, dense bones helped too. However, my gums receded more than population norms and I now have early arthritis. Still continued (Mediterranean) diet and exercise and a disciplined life have left me stronger and healthier. My heart is good, I've remained slim and there are many other health benefits. Advice: had I been diagnosed sooner I would have started strength training earlier and maybe avoided so much surgery.

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Comment from: Cheryl, 35-44 Female (Patient) Published: April 30

A couple of years ago I finally found out I have Ehlers-Danlos syndrome. Same as many of you, I have had knee surgeries, shots, ankle sprains, popping in and out of joints. Every morning I have to pop my knees and ankles 'back into place' before leaving the bed. Too much ibuprofen led me to prescription NSAIDS. I use gels, creams, and Biofreeze on knees on top of drugs. Now my doctor wants me to change to prescription cream. Helps some, but nothing seems to work for taking away the pain. People don't believe you are in pain when you look normal. All I see is that it will get worse. I am 53 years old now, I don't know how much longer I can go on.

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