Jyll

Hi, my name is Jyll. I was born March 24, 1973 in Toledo , Ohio. I’m so glad to have found this website through Kaytee, one of my GT sisters! I’m not alone anymore. When I was born my umbilical cord would not stop bleeding. After three weeks it was cauterized. I was about five months old, and from rolling about in my play pen, my mom noticed that there were bruises on me. The doctor sent me for my first bleeding time test. The bleeding time was more than 10 minutes. So, my pediatrician sent me to a hematologist. After more blood work the hematologist diagnosed me with Von Willebrands Disease at nine months of age. My great grandmother was from Finland and had a history of bruising and nose bleeds. Von Willebrands disease was associated with the Alland Islands , off the coast of Finland , so we thought that was the familial connection.

My mom hoped that vitamins would take care of the problem, but she realized the journey to learn about my blood disorder had just begun!

When I was two, I was tested again. The episodes of bruising and bleeding had continued, so much that my Gramma sewed pot holders into my pajamas, so my knees wouldn’t bruise so much! . BUT, Von Willabrands was NOT the case. The testing showed me to have GT..and so now the GT story begins from my age of two. One of the first major bleeds that I had I don’t remember, but my family does. We were all playing in the back yard it was summer time. I had a dog named Baby and I loved to play with her. I was playing with her and she bumped against me, and I pitched forward and mashed my face on our snowmobile trailer. Accidents happen even when parents are right there.

My mom was there rushed over and knew this was bad. I had almost bitten my tongue in half.

She scooped me up, had the neighbor Debbie scoop up the rest of the kids and we all jumped into the car and rushed to the hospital, with Debbie holding a wet towel on my mouth and my mom driving like a maniac. No cell phones back in those days to call for a police escort or ambulance quickly we just did it ourselves.

The ER staff didn’t have a clue what GT was, and of course they never think a mom knows what they are talking about. I wouldn’t stop bleeding and they had never experienced a trauma like this in a three year old with a bleeding disorder. They kept saying to my mom “don’t you mean thrombocytopenia? Finally the hematologist called and things began to get in better order. Amicar was ordered and I was treated that way, and my first visit to the hospital emergency.

That was the first of many trauma crisis during my younger years. At age 12, just three months after I began my menses, I had a major crisis. My hemoglobin dropped to five. We were downtown at a concert with my step-sister. I was the one who always ran ten steps ahead of everyone, but that day I could barely climb the stairs. My mom took my pulse at the concert, and it was 180, she immediately phoned the doctor. I spent a week in the hospital, and that was my first time for a blood transfusion.

Information about Aids had just been coming out all over the news that year, and I was so scared that I was going to get Aids from the transfusions. Mom and the nurses and everyone tried to assure me how well the blood was tested, and that we did not live in a High risk area, but no one really knew much then. We all prayed, Mom told me later she was scared too, but I had to have the blood transfusions.

I was put on birth control pills and depo provera also, to control the menses, and have had gynecological problems for many years since.

At 17 I complained all of the time that my side hurt. I was feeling constipated, and miserable. One night I was with friends at a movie, and I had to come home, the pain was so bad. My pediatrician had been treating me for indigestion.

My mom called the next day, made an appointment, and we saw the doctor. This time I saw a different doc in the group, a lady, and she pressed around and sent me for a STAT ultrasound, where they found a cyst on my right ovary the size of a grapefruit. No indigestion……I was in trouble.

By the way, my mom is in the medical field, and she never took any excuses from the docs. She was on top of it all, and I was lucky she could sometimes get me in for tests at the head of the line, if needed. She knew who to call.

In 1991 I had my cyst removed, but unfortunately the doctor had to remove my right ovary and tube. Then a few years later, I developed cysts on my left ovary. In 1996 I had to have those cyst removed, which only left me with 20% of my left ovary. At age 30 I finally had enough bleeding, pain and feeling bad that I agreed to have a hysterectomy to improve my quality of life. Although this was a very tough decision for me and I went to see two different Infertility Specialists, I knew this would be the best decision for my quality of life. Yes, my life has been so much better since despite the hormone issues I have encountered.

I remain positive, and it is good now to have met many friends from the GT website, and attending the fundraisers in Georgia . My husband Randy, Sister and Mom are very supportive and understanding.

~Jyll~

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