Welcome to the ASED (EDST) website




The symptoms indicating pertinent and irrefutable Ehlers-Danlos syndrome diagnosis are:

  • Tiredness ;
  • Pains which are diffuse, variable, fly-away, and resistant to antalgic medications;
  • Joint hyper-mobility;
  • Fragile skin;
  • BLEEDINGS (frequent bruisings, nose bleeds, metrorrhagia [uterine bleeding], gingivitis [gum bleeding], hemorrhaging wounds);
  • Disorders (confusions) of proprioception and the body image;
  • Digestive tract disorders (especially constipation and acid reflux).

 

 

Professor Claude Hamonet

Honorary President

 

 


 

 

Those suffering from EDS are handicap “intermittents” (so to speak). Their handicap is variable and instable with a shifting intensity which is unpredictable; one day, walking is very hard but possible, the next day the use of a wheelchair, -sometimes an electric one - is compulsory. This irregular state requires a high level of adjustability and the loss of spontaneity. Those suffering from EDS do not know to what extent they can trust their body from one minute to the next! They wander in a medical and social “no man’s land”: disable persons, but with frequent and fluctuating levels.

Lydie says “Others cannot conceive of the fact that the disease is insidious and that it plays tricks on us. When I am shopping in a supermarket, I sometimes get up from my wheelchair to reach for some groceries which I cannot reach sitting down. People stare at me and whisper that I am pretending to be handicapped.”

As for Sophie, she confides about her day-to-day existence “I am a pretty doll but my joints do not function. “Elasti-girl” in The Incredibles is far from being fun. My joint problem isolates me. Sometimes I don’t use my orthopedic devices and the pain is so intense that it confirms to me that ASED is not fictional and I am not nuts… “

 

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All the necessary steps required by the representatives of health insurance agencies and the departmental disability agencies only make things more difficult.

Since ASED is not well known and manifests fluctuating unpredictable symptoms, doctors often reject an ASED diagnosis established by another medical colleague.

ASED leads to significant social disorders, making it difficult for patients to attend school or to keep a job. The lack of understanding by the medical profession also creates psychological disorders. These problems have numerous consequences on family life, making it more difficult to cope with the disease.

 

 

For Lydie, “the world of the work is closed. For us, it is difficult to work normally because days follow each other but are never alike. You can get up one morning, having no pains, not being tired and work as a normal person. The next day you are absolutely unable to move because your hips or arms or ankles are dislocated. Going to work that day is inconceivable. This unpredictability is very difficult for employers to understand. They want a reliable staff. It is hard to explain during a job interview, that there are days when it is absolutely impossible to get up and go to work. Honesty does not pay and in case of unjustified absence, either the contract is not renewed or they dismiss you for repeated absences.”

 

 

Sophie is misunderstood, she admits that "my friends, even if they know that something is wrong, continue to invite me to the other side of the city in places without an elevator telling me the subway station … "

 

 

They are “intermittents” of life, left in total loneliness, quite simply…

At this point the ASED association swings into action in order to give EDS victims support, encouragement, and orientation; educating not only those afflicted but also their relatives as well as the health care professionals, with the aim of controlling or containing EDS.

 

And to smile and laugh again ... together. The door is open, please come in and “welcome” in our world !!

 

Nelly SERRE
ASED President

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