Struggle with Ehlers Danlos Syndrome

By Corne, Ehlers danlos syndrome, fibromyalgia, Psoratic arthritis, South Africa, March 2, 2018

Combo of some surgeries

Dear Reader

I am 31 years old and have had 38 operations to date due to my condition or the side effects of either the condition, or the medication.

I suffer from Ehlers Danlos Syndrome, Psoratic Arhritis, Fibromylgia and Gastric Reflux Disorder. 

Both my ankles are fused (Subtaylor-fusion) as welll as my dominant right shoulder. No operations has worked and I was left with chronic pain until it was Fused (Arthrodesis).
I have had multiple surgeries since then on my left shoulder. Last operation was in June 2017, a Lattissimus Dorsi , it is also called tendon transplant) which was not successful and pain and instability are worse than before.
My only option left is another Arthrodesis on my left shoulder which will make me totally dependant on others that I am not ready for.

Through this vivid journey I have learnt a lot and would do so many things differently. I had to go through it to know what I know today.

What's done is done but would be such a waste not to try help other people who still have a choice, either to operate or not. 

There is so much to take into account when deciding upon an operation. Getting advice from someone who has been there before can really help you in a way that no doctor can.
I feel I have a gained a lot of knowledge to help others.

My goal is to raise awareness of EDS and create a community where people can share their pain, talk openly about their disease and connect with people.

There is def a lack of knowledge about this syndrome among nurses and especially doctors. 

My goal is not only to raise awereness of EDS, but I also have a Christmas Project I do each year where I welcome people who want to help. (Organizing and collecting Christmas presents for needy children).

Aswell as my Organ Donar Brochure I made with the hope to be able to use one day as this is something I am so passionate about.


*Find others with Ehlers-Danlos syndrome on RareConnect, the online platform for people affected by rare diseases.


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