I just found your website.
am a 41 yr. old white female with GT bleeding disorder.
I have never known anyone with this but me. I have been
told there are only around 1,200 people in the US that have
this. I would like to be able to register on your website
and maybe post my story.
from the small town of Royson Ga. I was diagnosed at 6 mos
old. My pacifier bruised my mouth. They thought I had von
Williebrands disease until I was 18 yrs old.
I was having
to get transfusions for my periods and they were giving me a clotting
factor for vWD but it didn't work. They sent me to the CDC in
Atlanta & I was re-diagnosed with GT.
At 22 I got
married and moved to Jacksonville Fl. where I went to the University
of Florida for a 2nd opinion & they agreed with CDC. From
the time I was 8 mos old until 22 I was in the hospital all the
time with nose bleeds & my periods. I can't tell you how many
transfusions I have had, but it was a lot There were so many times
they would tell my mom I wouldn't make it through the night &
churches from everywhere prayed for me & I always pulled through.
hep C from all of the transfusions & was very sick for the
last 10 yrs. I was treated with Interon the whole year of 2004.
I was in & out of the doctor's office with very bad nosebleeds
& my hemoglobin stayed between 7 & 8 but the chemo worked.
I have been virus free for 2yrs now.
I was hospitalized
last year for a bad GI bleed. My hemoglobin got down to 5. I also
have to have iron transfusions from time to time which I hate,
cause it takes 8 hrs. Anyway I'm glad to be alive!
I love your
website. I would love to email some of the older ladies (my age)
since I've never known anyone with this. My name is Sherry, and
I live in Jax Fl. Cant wait to hear from you. My email is firstname.lastname@example.org