Sherry

Hi, I just found your website.

I 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.

I am 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.

I contracted 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 flcrutch@yahoo.com

 

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