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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."

Apr 17, 2019 • 2 comments

Emmanuelle, from Carenity France, writes to explain what Ehlers-Danlos syndrome really is.

Read this brief testimonial, and feel free to share it and spread the word about the disease! 

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 physical therapy will give you a little relief, 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 Practicioner 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 physical therapy, and I told him "we'll talk about it again"...

Many thanks to Emmanuelle for sharing her story!

Don't forget to comment on this testimonial, provide your support, and share with other members what is the most difficult for you on a daily basis with your condition.

avatar Louise Bollecker

Author: Louise Bollecker, Community Manager France and Content Manager

Community Manager of Carenity in France, Louise is also Content Manager in charge of moderating and distributing articles, videos and testimonials to all members. Specialised in Brand Content, her objective is to carry the voice of patients and facilitate their experience on the site.

Comments

on 4/18/19

Hello members,

I thought you may find this testimonial interesting and perhaps relatable, so I hope you do not mind me tagging you.

Share support Emmanuelle - the member who provided this testimonial - and also share what you find most difficult for you on a daily basis.

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on 4/23/19

Thank you so much for sharing with us. I was completely unfamiliar with this condition, but you have truly opened my eyes to a disease that I did not know exist. It sounds like a horrible condition, and I too, know the horrible repercussions of misdiagnoses and medical doctors who have no empathy for what you are going through. I hope you continue to be strong and wish you the best in strength and health.

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