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


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