My name is Pauline, I was born in France in 1993 and I still live in France.
I was diagnosed with GT at 6 months (diagnosis not being possible, at the time, before 6 months). I had many problems with GT as a child. I had a gastrointestinal hemorrhage when I was 3 years old. The doctors did not know where it came from. As a child, I had frequent nosebleeds, especially teeth (when my baby teeth fell out) and gums. However, these bleedings did not lead to transfusions. I had a lot of bruises on my body, being an active child. I did not have the opportunity to practice contact sports (football, etc). I did contemporary dance, which seemed much quieter for my mom, much TOO quiet for me =). I did not have any other violent bleeding before my adolescence (other than the happy period of menstruation).
I’m going to be a little long on the next paragraph, but I wish when I was younger, I had testimonials from women with the Glanzmann’s Research Foundation. I think that maybe my testimony will help. I had my first period around the age of 12, as I recall. The bleeding was controlled by the administration of “Gonapeptyl”. A drug is injected in the form of a prick in the thigh. This lasted for a while but then did not work anymore. I had to be hospitalized many times because of this, and I received many transfusions. The longest I was hospitalized for my period was when I was 18. I was in the hospital for a month. I have very few memories, I was almost in a coma, having lost a lot of blood. The doctors had to inject me with morphine for the pain which was unbearable and made me lose consciousness. I had platelet and hemoglobin transfusions.
All this led to severe anemia, which I tried to control by taking ferritin tablets. Unfortunately, taking these tablets was difficult, as the side effects on my stomach were very present.
Since I turned 20 (I think), I have been on Lutenyl, a birth control pill that completely stops my periods. My hemoglobin and ferritin levels stabilized only a year ago, on my 27th birthday.
Concerning the other medical operations,
– I also had a wisdom teeth extraction, which went well (injection of Novo 7 to limit the bleeding), as well as partial removal of my tonsils, and a sinus operation (I had to sleep apnea). These operations went well and were systematically performed under the supervision of specialized hematologists.
– In February 2021, I underwent conization (removal of a small part of the cervix following suspicious signs that could lead to cervical cancer in time). The operation also went well.
I live better with my disease for a few years, I “accept” it better than before. I almost never deprive myself of what I want to do, always with safety. I have been doing weight training for 5 years and running regularly for 1 year. I practice these sports with full awareness of GT. I listen to my body; I make myself safe during my exercises. If I have “abnormal” pain, I stop the exercise.
At 28 years old, I still have many bruises on my body (I am extremely clumsy, I bump into every corner of the furniture!), but I prefer to “enjoy” it. When people ask me too many indiscreet questions about these bruises, I say that I do boxing, and they usually leave me alone after that answer!
I would agree with Peter about the alcohol. I had a similar period to all young students. I came close to having a stomach ulcer, certainly because of the amount of alcohol consumed during those times. Have fun, but always be aware of your body, and your health. I’m also joining him about moving. Sport is a therapy for everyone, and I believe it is more so when you have a health problem. I feel much better since I regularly practice sports.
