Thursday, 5 May 2016

Ehlers Danlos Syndrome

What is your name and age?
My name is Michaela and I'm 39 years old.

What is EDS?
EDS is Ehlers Danlos Syndrome.
It is a genetic condition that effects our make up of collagen in the skin, there fore leaving us prone to easy bruising, dislocations/sublaxations and many many more side effects, it affects anything in the body made of flesh, right down to our bone marrow, which leaves us open to rupturing heart valves, heamorage and countless other internal and external injuries.

When were you diagnosed?
I was originally diagnosed with fibromyalgia back in 1999.
I had a history as being "accident prone" as a child but no doctor ever looked into it.
It was only when my son was diagnosed in 2000 with eds that I started to push the doctors to look at me more seriously. Despite the fact I argued the point that my son could only have gotten this gene off me the doctors wouldn't listen.
It took me another 14 years before I finally got the correct diagnosis, that was 14 years of being shrugged off with painkillers and physiotherapy which only made my condition worse.
Despite suffering constant hip dislocations and giving birth to 7 children in total with the same condition it still took them some convincing.

What treatment have you received?
There is no treatment for EDS.
Except pain management!
I'm currently on a daily dose of 52 tablets per day, that is to help with the pain and the rest of the conditions the EDS causes, such as IBS , migraines, and it also impedes my vitD absorbtion.

Is there a cure?
There is no cure, this is now my life. Dislocated joints that can't be surgically repaired, (stitches rip our skin), pain I have no real control over.

Is it hereditary?
It is hereditary, it means my children have it too, and its possible there children will also get it.

What additional information can you please share?
So little is known about the condition.
The support network is extremely low.
A lot of doctors still don't know what it is. We find support through place like and facebook groups.



The EDS Foundation:

EDS Support UK:

EDS Support Facebook:

No comments:

Post a Comment