I'm new and could really use some help.

July 13, 2004

To get the whole story I have to start from my dad's death. After he

died from a ruptured anurism, my mom was told by the docs they this

he had EDS. We then found out that my grandmother also died from

this as well as 2 other family members. The docs told my mom to have

us kids checked every 5 years for EDS. Well it was never done. When

I got married the first time I was very young. My mom told me that

we have to be checked for EDS every 5 years. No big deal. We where

never told why. Now that I am married again and now have 4 boys, our

youngest has alot of health issues. One of these issues is an

enlarged aorta. So off to Genetics to find out what might be

causeing all these problems. She asks for family history. Husbands

side is ok. She then gets to my side. I tell her about my father and

grandmother and two uncles dieing from Anurisms. She tells me about

EDS and told her that my mom was told we had to be tested but we

never have. What's the big deal. Well now I know what the big deal

is. UGH....We where told by genetics that they don't know what type

of eds we have. They did the tests they could and they came back

fine. But she is possitive this is what we have. My oldest son and I

will be tested with in the next 6 months to a year. Because of not

knowing what kind we have makes things very difficult. I know not

everyone knows the types they are. Right now I am having tests done

for my back. I have always had weak joints. Broke my ankles lots

when I was growing up. Couldn't do gym very often. The tests they

are trying to do for my back might kill me because I'm highly

allergic to iodine. But it seems my spine has a hole in it that's

not supposted to be there and I wasn't born that way. It's gotten

worse in the last 3 years. There isn't a day that goes by that I

don't hurt. It's causeing problems with my legs as well. They said

that this hole is where my pain is coming from and is probably

caused by the EDS. Does anyone have something simular to this??? My

family all died between the ages of 38-42 with anurisms. I'm very

nervous cause I'm going to be 35 in 3 months. Any information would

be great. Thank you for listening to this long winded message.

HUGGLES

Grace

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