When she started
her period in 1993, it was very bad right away. She passed out
and was hospitalized. She got a few shots of Depoprovera and then
started on Lo Ovral. It took quite a while to get completely under
control. In 1996, Cassidy got very tired and passed out. She was
bleeding internally and was hospitalized for 2 weeks, so had to
miss a lot of school. She had had her own blood frozen a year
before, so she was given that.
When she had
her wisdom teeth pulled, she was just given a lot of Amicar before,
and the procedure went well. She has had her hemoglobin checked
numerous times, and takes prescription iron pills. In 2002, she
moved from Ohio to Connecticut, so she had her hemoglobin checked
again and it was at 6, so she received her own blood again. She
just got married May 10, 2003 and does graphic design for a Christian
organization called Young Life, which is an outreach to High Schoolers.
I, Kari, was born in 1981 and diagnosed right away. When I was
24 days old, I was bleeding internally. I was admitted to the
hospital with a hemoglobin of 6. I had 2 blood transfusions and
platelets. The nurse took out the IV and put a band-aid on my
arm. I lost 35 cc of blood and had another transfusion. When I
was 35 days old I was admitted to the hospital again for a nosebleed
and had platelets. 20 days later I got croupe and was admitted
again with a hemoglobin of 8 and had another transfusion. In 1983
I got stitches in my tongue, and in 1984, I vomitted blood, passed
out, and went into shock. I was admitted with a hemoglobin of
6 and got blood and platelets.
I started
my period in 1995 and it was intsantly bad. I was given a shot
of Depoprovera which did not work at all. I then started birth
control pills and had to switch kinds until I found one that worked
for me, Lo Ovral. It was pretty bad for about a year and a half,
but ever since it has been totally under control.
I have always
had many nosebleeds, mostly in the winter. I keep a humidifier
in my bedroom which really helps. I use amicar when they don't
seem to be stopping. I was hospitalized in 2001 for a nosebleed,
which was the first hospitalization since I was very little. Then
in 2002 I had my wisdom teeth pulled. I was admitted to the hospital
the night before and they started an IV of DDAVP. After surgery
they gave me 2 shots of Novo 7, and they did not seem to work.
I stayed in the hospital for 3 days because the bleeding was not
stopping, and I was very weak. Now, I attend the Ohio State University,
and plan to be a math teacher when I get out in 2005.
Overall, Cassidy and I feel very fortunate that our disorder hasn't
kept us from much. Our parents were told by our doctors to always
treat us like normal kids. We played many sports from the time
we were little, such as soccer, basketball, gymnastics, cheerleading,
softball, and track. We both went away from home for college.
We have had many bumps, bruises, and scary incidents, but we both
have a deep faith in Jesus Christ which gets us through trials.
We feel fortunate that our disorder is not life-threatening and
does not keep us from living and experiencing life, and we both
have faith that God will give us healthy children some day.
Our advice to parents of children with GT is simply to treat your
children normal. Teach them how to deal with their minor bleeds
without panicking. Don't let them pity themselves and they will
learn that they are lucky because there are worse diseases that
they could have.
Thanks a lot,
Kari
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