Final EDS diagnosis after 17 years

It took me 17 years to find out what I was suffering from. There are still not enough doctors that know about Ehlers–Danlos syndrome and how to diagnose it. Too many patients are lost for too long without knowing, it’s a long and painful path.

Written by Genevieve,

My childhood was relatively normal, I was gifted in gymnastics and swimming, I was very supple and I could do the splits with ease. I didn’t like running because I would fall easily and I used to twist my ankle very often. My parents weren’t worried at that time.

I got married when I was 20 years old and I have 4 boys. It was after the birth of my 4th son that I started getting joint problems. I would have intense pain in my lower back and pelvis, I had a lot of strains and ligament ruptures, I had no stability in my ankles. I dislocated my shoulder after a nasty fall on the left arm. After many months, the pain intensified and spread to my whole body, no treatment would relieve it. I have seen a number of specialists without a single result. In the end they said that it was psychological and that I was depressed. I then went to a chronic pain center and I was diagnosed with Fibromyalgia.

Fortunately, I went to a rheumatologist two years ago for pain in my hands and wrists, she noticed serious articular hyperlaxity and sent me to the genetic center for connective tissue illnesses in Gand. They confirmed Ehlers–Danlos syndrome hypermobility type.

Thanks to that I was better taken care of in terms of physiotherapy care, I wear compression garments which provide me with added comfort. Unfortunately I cannot work anymore and I am retired, but I also have the time to go to the physio every day, and I also have sessions at the swimming pool. My husband helps me a lot and gives me a great deal of support. He helped me with all the disability recognition and administrative procedures to get material support.

The hardest thing with EDS is the constant pain and the great fatigue that follows and non-restorative sleep. It is also the fact that you know that you won’t be cured, because no treatment exists at the moment. With EDS, you must mourn a lot of things because I can’t do many tasks as before. Namely walking and going for walks, I must take a wheelchair, household tasks are nearly impossible, I have help from family for that, my husband and children. EDS is a very crippling illness, but it is invisible and you must often face the incomprehension of a great number of people.

Deep down I hope that research will make great progress and that one day we will be able to treat ourselves better than today.

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How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
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