Hi, my name is Sherry Crutchfield, my husband and I live in Fernandina Beach, FL.
I aa 54 years old with GT. I have never known anyone but me with this disorder until I found this current site of Helen Smith’s.
I am from the small town of Roysto, Ga. I was diagnosed at six mos old. My pacifier bruised my mouth. They thought I had von Williebrands disease until I was 18 years old.
I was in and out of the hospital all the time with nosebleeds. I was having to get blood transfusions for my nose bleeds as well as for my periods, and they were giving me a clotting factor for vWD, but it wasn’t working. 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 the CDC. From the time I was eight months old until I was 22, I was in the hospital all the time with nose bleeds & my periods. I can’t tell you how many blood transfusions and Cryoprecipitate I have had, but it was a lot. That was all they knew to do for me back then. 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 remember one time in particular my mom was crying cause the doctor told her to say her goodbyes. I pulled through & I always pulled through. I had never heard of Amicar or Novo Seven until I met Helen. I had to find a hematologist who would agree to give me these meds. I found a hematologist at Mayo Clinic to provide me with the Amicar; I now take Lysteda. He will provide me with novo seven in the hospital but will not give it to me to keep with me. I am still trying to get him to do that.
I contracted hep C from all of the transfusions & was very sick for 10 years. My viral load was in the millions, and the University of Florida nor my Hepatitis doctor had ever treated anyone with a bleeding disorder but agreed I had to be treated. I was treated with Interferon and ribavirin for 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 16 years now.
I have been hospitalized for GI bleeds. My hemoglobin has gotten down to 4 and 5 with them. I also have to have iron transfusions regularly.
I was hospitalized for 11 days in ICU back in 2018 with a very bad nosebleed, I almost passed away. It was a tough time. I experienced this as a child, but this was my first time as an adult. I had several seizures and scared my husband very badly. The ENT ended up doing surgery to cap the blood vessels that were bleeding and did a deviated septum surgery while there. I bled a lot after that. I had numerous blood transfusions and nNovoseven while in the hospital. Also, I had a drip of Lysteda 24/7 while in the hospital. I live an everyday life despite nose bleeds, gum bleeds, joint bleeds, etc. I am very thankful to be here and cherish each day. I am proud to be one of God’s miracles. Please feel free to ask if anyone wants to talk or ask me questions.
