"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 • 3 comments
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!
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"...
Claire: "Continuing to work with rheumatoid arthritis"
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.