Ehlers-Danlos syndrome (EDS) community

Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hypermobility, skin hyper extensibility and abnormal wound healing.

The long road to the diagnosis of my illness ...

Written by Valy73, published 3 days ago.

It took 30 years ...

I remember many times, when I was young, my legs became folded on the sides and I was unable to get up by myself .... "Mom, hurry, my knees have dislocated!! ".

The years passed but no the worries ... until I sometimes found myself daily on the floor, my knees having "collapsed" under me with severe pain!
I ended up in the emergency room, with a knee doubling in volume, pain, and hearing the doctors telling my parents: The knees cannot dislocate like that, it's impossible!!! Your daughter has bumped them and she does not want to say!!! Today, if I had the names of the doctors in mind, I would go willingly find them and set out all the facts to them!!!

The high school years were, in addition to the knees, painful on the hands, with a new problem ... I could not write for very long. I went to physicians ... but of course they looked at me with an air of "ooh this one is a bit lazy.”

Courageously and boldly, I have made my way at the rhythm of dislocations, pain in writing and harmful thoughts.

I have left adolescence and my adult life begun with back pains and new consultations. I started to hear: "It’s not possible you still have something while the X-rays are perfect!!! "

I started sport, evil for evil, I needed to let off steam!

In short, happy to live anyway, I went on with my life. My knees were "quiet" for a few years, then a new dislocation and this time it resulted in surgery.
The pain lasted longer than expected, and I should have run like a rabbit after 3 months and that did not happen ... I went back to see my surgeon who put me back to work with a friendly phrase " you need to put in your own work, you have nothing!!!".

There, the anger starts to rise ... I am at work all day, the pain does not leave me and my mood fell. But I refused to stop, I tried to show all the doctors that the "lazy one" is at work.

I changed doctors several times, desperate with not being listened to. And finally, one doctor was really worried…. He directed me to a rheumatologist who also worried without understanding what is happening to me, he redirected me to a neurologist and there, while examining me, she noticed my flexibility and said from the neurological point of view everything is well, but your flexibility reminded her of a disease called Ehlers Danlos syndrome. I made an appointment with an Ehlers-Danlos syndrome expert.
We are greeted kindly. I'm so stressed because I'm pretty sure I'm going to be criticized as usual.

The examination began and the specialist accompanied by a psychologist and pupils listen to me carefully, I am confused. The verdict is rendered, and I understand first that there is nothing, as usual then. The consultation ends. The psychologist stays in the office with me and my companion. I look at her without speaking. We talk and tears rise. I am obviously concerned about the diagnosis, but also, more importantly, IT TOOK 30 YEARS before anyone listened to me and understood, that anyone believes me! I cried and cried.

While leaving, I was given the coordinates of the French EDS Association (AFSED)

Faced with new worries, this time administratively, I contacted the person on the list of the association who could help me with medical advice, Mrs. Marie-Hélène Boucand. She was fast to reply to my mail, with a kindness and understanding that I wasn’t used to.

Whenever I needed her, she was there. Indescribable relief. Finally, I no longer feel alone with my illness. People are there, at any time to inform me, me and all those in need. I receive their papers which address all this, and again it makes me feel good.

The diagnosis of my EDS will change my professional life and administrative procedures are painful and complicated, but I'm much less worried. The association is there.

I really want to thank them with all my heart, and especially Marie-Hélène, with whom I got on well.

THANK YOU and carry on as many people need you.

Written by Valy73, published 3 days ago.

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