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"Let me introduce myself, my name is Ehlers Danlos Syndrome and I have the pleasure of bothering you endlessly. I have all the time in the world because I'm incurable."

Emmanuelle, from Carenity France, takes up writing to explain what Ehlers-Danlos syndrome really is. Read this text and feel free to share it to spread the word about the disease around you! 

Emmanuelle's testimonial
If Ehlers-Danlos syndrome could talk

Hello, my name is Ehlers-Danlos Syndrome.

Yes, I know it's a bit of a barbaric name! I am a rare disease of collagen and hyperlaxity and believe me, considering all the collagen you have in your body and the movements it makes on a daily basis, I have the pleasure of bothering you endlessly.

I have all the time in the world because I'm incurable. Only physiotherapy will relieve you a little, but often you will find that it is not enough. I will prevent your wounds from healing normally, I will create post-operative complications since I will affect your fibrous tissues. I will also cause sprains, dislocations and fractures.

Anyway, I'm a big burden to those whose bodies I live in. For some, the pain will be such that they will find themselves in a wheelchair. I'm going, I'm coming, I'm going my way.

I can totally ruin your life and especially as my impact is not visible, I imprison my victims in a misunderstanding and non-recognition of the medical profession.

Oh yes, I am often misdiagnosed because I am regularly confused with fibromyalgia or ankylosing spondylitis.

As you will have understood, this is my daily battle.

There is this sentence that I will never forget from a Medical Officer who was totally lacking in empathy and who once told me: "Madam, we must take it upon ourselves, we all have our little health concerns". I invited him to attend, like me, a hospital's rehabilitation centre three times a week as well as private physiotherapy and I told him "we'll talk about it again"...

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Quentin: "ulcerative colitis won't stop me from traveling"

Many thanks to Emmanuelle for sharing her story! Don't forget to comment on this testimonial to provide your support and to share with other members what is most difficult for you on a daily basis.

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

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on 4/26/19

Have you read this testimonial? Do you think she captured the essence of the difficulties of this condition? Is there anything you would add?

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on 4/28/19

I think that really does encapsulate how a lot of us feel. It can feel like a daily battle to live with little to no help from the medical profession. Some pain killers, some physio, learn to deal with it. Medical professionals don't understand EDS or other hypermobile disorders unless they are a specialist and don't seem to know what to do with us as patients. From an outside perspective, we appear, at first glance, to be normal. Meaning that many do not understand what we go through.

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on 4/29/19

@Hidden username Thank you for your feedback, it's important to spread awareness about these conditions to increase understanding.

Perhaps you have already seen it but we have another photograph testimonial about this condition too, you can find it by clicking HERE.