This is Debbie
and this is my story.
I was born my mom says that she instantly knew I had GT
because my older sister Cristiana, who is 27 yrs old also
has GT, so the bruising was obvious that I also had GT.
Testing was done and was positive for GT. From what my mom
has told me I really didn't have any problems as a child
away from the usual bruising.
I was 13 yrs old I started my period. First month fine,
second month fine, third month...... not so fine.
was bleeding alot. I was soaking an overnight sanitary napkin
in 30 minutes. I was taken to the hospital with a hematicrit of
12 and a hemoglobin of 3.4. I was hospitalized for 6 months. I
got 10 Red blood transfusions, plenty of Amicar, and Novo 7.
I was 15 I had a tooth pulled and I was in the hospital for 3
days. I had 2 Red blood transfusions again plenty of Amicar and
When I was
19 I got a nosebleed, it was out of control. I had my nose packed
and that didn't stop it. I had 2 Red blood transfusions and they
also gave me 3 fresh frozen plasma. I was taking my Amicar and
again got some more Novo 7.
of 2006 I had to have emergency Gallbladder surgery. I had a stone
caught in the Gallbladder duct. I was hospitalized for 13 days.
I had another 10 Red blood transfusions, I had 6 platelet transfusions
and Amicar every 6 hours by I.V., and I was also getting Novo
7. I was bleeding internally from the cut that they had made inside
of me to take out the Gallbladder.
I have had
such a hard life with GT. I live in a small town and nobody knows
about GT. When I was little I can remember all the kids telling
me I had Aids because I would bruise, and I was always open with
what I have, so kids would tell me I had Aids. I also find it
very frustrating when I go to the hospital here in my town. Not
even Doctors know what I am talking about when I tell them I have
GT. The closest town to a hematologist that knows about me, and
is comfortable with my situation, is in a town 2 hours away. So
when I get sick Its real hard for me to find a doctor that knows
This is my story and I hope you can post it. I have also included
a photo of me to post with my story. Thank you.