Growing up with classical EDS

Posted September 3, 2018

by Ellie W.

Hi! My name is Ellie, I am 19 years old and I live in a small rural area of Victoria, Australia.

As a baby, I would fall over very often and would bruise easily. My skin would cut open with the smallest impact. My parents carted me around to a lot of doctors, who all dismissed these traits as those characteristic of any ‘bruisy baby’.

On a family holiday in Cairns, I fell over and was treated at a local GP clinic. The clinic I saw assessed my symptoms and immediately identified them as EDS. I was then referred to the Royal Children’s Hospital in Melbourne where I was formally diagnosed with Ehlers-Danlos Syndrome by the genetics team. As the genetic testing for EDS was not yet available in Australia, I was never officially tested for EDS, however the doctors are confident that I have it based on my symptoms. I was diagnosed with Classical EDS in 2004 at the age of 5.

My symptoms have always been largely to do with my very sensitive and delicate skin that breaks open at the smallest of impacts.

As a child, I struggled to understand why my body is the way it is, and why I could not always participate in the same activities as my friends.

Wound care and healing was also an issue, in that it would take a very long time for my wounds to heal, leaving me out of action for long periods of time.

As I have gotten older, I have become much more aware of myself and my surroundings, and I am much more cautious of situations that may cause me harm. I am able to manage my symptoms much better and can live my day to day live with relative ease. At the moment I am having issues with my neck, but regular osteopath treatments seem to be doing wonders. I also have issues with my hyperextending fingers and my delicate skin. I have also had to stop participating in many sports that have or have the potential to cause injury.

I am very aware that there are many others who have diagnosis of EDS that are much more severe than my own, and that cause much more distress and discomfort to individuals. I am blessed to have been given the care and education that I have regarding my own treatment and symptoms.

 

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