This is Debbie and this is my story.

When 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.

When I was 13 yrs old I started my period. First month fine, second month fine, third month...... not so fine.

I 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.

Then when 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 Novo 7.

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.

In September 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 about GT.

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.

Debbie

Email Debbie at: SweetLittleLolipop@Yahoo.Com

 

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