Denise K., near Pittsburgh, PA, USA
Here is my story….
One day I was on the internet and I came
upon the GT web site. When I looked at a group picture on
the site I gasped, I could tell who had GT from the tell tale
bruises they had. For the first time in my life I saw other
people just like ME!
My name is Denise K. I live in a small town
near Pittsburgh, PA and I have been living with GT for 49
years. I was diagnosed at age 3 months after I developed some
unexplained bruising. I am the oldest of 4 daughters. Despite
my parents knowing the odds they had 3 more children and thankfully
none have GT.
During childhood my main problem was of course
nosebleeds, requiring numerous hospital admissions and transfusions.
I had one GI bleed and a few joint bleeds. Despite all of
this my parents encouraged me to lead a normal life. I rode
bikes, ice skated (fairly well) and roller skated (not so
well). I had an amazing hematologist who always said “think
positive sis” and to this day I strive to heed those
words.
During adolescence I did not want anyone to
know I was different. I refused to wear my Medic Alert bracelet
and tried to cover my bruises with make-up. When I was 15
I started menstruating and it would not stop. I was hospitalized
and required 96 units of blood and platelets. Back in those
days the only treatment option was radiation to my ovaries
which was like a non surgical hysterectomy. I got terribly
sick but after several weeks the bleeding stopped. I no longer
menstruate, require hormone replacement and am not able to
bear children.
After high school I fulfilled my childhood
dream. I became a nurse and began working in the very same
children’s hospital where I was a patient so many times.
When I was a child my parents had to leave the hospital at
8PM (hospital rules then), one of my favorite nurses help
me put on my paper nurses cap that I made in the playroom
and took me on her rounds to the pharmacy or the lab. I pretended
I was a nurse and always knew that someday I would be just
like Miss Doty and work at CHP. I even named my toy poodle
Doty after that nurse. I am still a nurse but found floor
nursing difficult for me physically so for the last 23 years
I have worked at the Poison Center taking calls from frantic
parents.
On December 12, 1981 I married the most remarkable
man. The day after our wedding I ended up in the hospital
with a terrible nosebleed and thus my new husband was initiated
to the life of GT. He is incredible and he knows my medical
history as well as I do. I was fairly healthy for the next
20 years then I developed GERD. I was diagnosed with gastric
polyps, a rare side effect of a medication I was taking. The
polyps began to bleed, despite numerous units of platelets,
blood, Novo VII and scopes I was near death and required a
partial gastrectomy in December of 2006. I had another 2 week
GI bleed since the surgery but now I am back to normal - well
as normal for a person with GT that is. I hope my story will
give parents of children with GT hope for the future and encourage
people just like ME to think positive and live life to the
fullest. Thank you for reading my story. Denise
Thanks for your time, take care.
Denise
Email
Denise
