Liz/Re: new here and question

March 26, 2004

Dear Liz,

Welcome to the group! This is a great and truly a wonderful helpful, loving

and fun group! First I feel I need to comment that I'm not sure how much

help a dermatologist can assist you in diagnosing EDS. You really need to

see a geneticist and rheumatologist to get a diagnosis. Second since you are

having surgery soon, make sure they type and crossmatch you for blood if you

need a transfusion during surgery. If you do Have EDS, they suggest the

surgeon use staples rather than sutures to close the wound or steri strips.

Sometimes our skin is fragile and difficult to suture back together. Hope

this helps some.

Sincerely, S.

new here and question

> Hi,

>

> I'm new to this group, mainly here to lurk and hopefully learn

> something about EDS. I was recently tested for bleeding disorders,

> and the results came back negative. When my hematologist saw I was

> double-jointed, she suggested I see a dermatologist to look into EDS.

> We're trying to account for a haematoma (~2.5 units of blood lost

> internally), plus some hemorrhaging, that I had after the birth of my

> child. We're doing this because I will probably need surgery to

> remove a large uterine fibroid, and we want to know how much of a

> risk blood loss will be.

>

> My dermatology appointment is still some time off, so I won't know

> for a while what type of EDS I might have. In the meantime, I'm

> wondering if anyone can comment on how EDS might affect surgical

> options, and how EDS-related bleeding problems might be handled

> during surgery. My understanding is that my choices will be between a

> myomectomy (removing just the fibroid, which typically involves a lot

> of blood loss) and a hysterectomy (less blood loss, but a radical way

> to treat a benign, if obnoxious, tumor). Anyone been through this too?

>

> Thanks,

> --Liz

>

> To learn more about EDS, visit our website:

>

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