LUMP GRUNGE (lump_grunge) wrote,
LUMP GRUNGE
lump_grunge

Truth: A potentially sad tale

Ok… Let me start from the beginning .
In October I went in for genetics testing They told me they believed I may have a syndrome similar to Marfan's it's called the Loeys-Dietz Syndrome

Well, last week I got the test results. I do have this syndrome.

http://en.wikipedia.org/wiki/Loeys-Dietz_Syndrome

http://www.incirculation.net/NewsItem/LoeysDietz-syndrome-identification-possible.aspx

I do not expect you to read the pages I linked… I just put them there as reference

They said that although the gene it affects is deformed or mutated it still works, so they do not believe I have a full blown case of it.
They are putting me on Blood pressure medication because the main thing (LDS) does is weaken the walls of your main arteries, mostly your aorta, but they believe it will be helpful if they stabilize my blood pressure so it does not put too much pressure on my arteries.
According to the most recent study the mean life span is 22.6 years and the max is 31.8 years.
Luckily those are biased on full-blown cases.
But it still scares you, ya know… to be told that you have a syndrome that could kill you without warning
They also told me there is a 50% chance any child I father will have the syndrome...
although they do not know the chances of the child having a worse case of it or lesser case… Should I bother trying to have children at all?

I have a few questions… they told me to make a list
I should get started…
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