Thank you for the kind words
I’m still reeling from a combination of shock and devastation.
I knew something was wrong/had to be wrong given how much had gone wrong with me over the course of my lifetime
I knew what EDS was… but the prevalence is only 1 in 5-10,000 therefore I was of the thought “surely not”.
Now I need to get past the grieving process… which I imagine will take some time.
Even if I was fertile. Having a kid means there’s roughly a 50% chance I pass this disease down to the kid.
My brother doesn’t have this disease… but he is almost certainly a carrier. I brought this up to him and he got angry “what bullshit! Of course I’m having kids! You think you know everything!”
But I actuslly do know what I’m talking about here. For every kid he has, 50% chance he passes down this life altering, serious genetic disease. A disease that will rack up obscene medical bills as the child is going to have to go through repeat surgeries and whatnot… with EDS you also need to have a cardiologist, pain management physicisn, psychiatrist, psychologist and more on board.
Very expensive
That’s if he can have kids to begin with… My fertility is impacted due to pituitary insufficiency… brother doesn’t seem to have hypogonadism however both parents had serious fertility issues
Took them almost a decade to concieve us… with six rounds of IVF… and we were still three months premature.
The stars were aligned, almost as if the universe was sending a message “hey! Don’t have kids!”
I tell people with EDS, or those who are carriers NOT to have kids. It’s simply not fair for the child.
I know its a blunt, cruel statemrnt to make. But how can one justify having a child that has a high chance of inheriting a dangerous, life limiting disease.
Not fair for the kid… I will always be a burden on society/drain on healthcare… I willxalways be a walking pharmacy… this isn’t what I signed up for… yet these are the cards i’ve been dealt.
I’ll adapt until I can’t deal with the pain anymore. Who knows when I’ll reach that stage. If it’s vEDS I’ll just drop dead randomly within the next 20 years. I doubt it’s vEDS though. More likely hEDS or cEDS.