Diagnosed with Glanzmann Thrombasthenia at Six Months Old
My name is Pauline, and I was born in France in 1993, where I still live today. At six months old, I was diagnosed with Glanzmann Thrombasthenia (GT), a rare platelet disorder that prevents blood from clotting properly.
As a child, I faced many challenges due to frequent nosebleeds, gum bleeding, and excessive bruising from everyday activities. When I was three years old, I suffered a gastrointestinal hemorrhage, but doctors were unable to determine the cause.
Despite these complications, I remained an active child, although I was unable to participate in contact sports like football. Instead, I practiced contemporary dance, which was probably a little too calm for my energetic nature!
The Challenges of Menstruation with Glanzmann Thrombasthenia
I want to share my experience as a woman with Glanzmann Thrombasthenia in the hope that it helps others facing similar challenges.
I had my first period at 12 years old, and initially, the bleeding was managed with Gonapeptyl, an injectable treatment. Over time, however, this method stopped working, leading to severe bleeding episodes and multiple hospitalizations.
One of the most difficult periods of my life came when I was 18 years old. I was hospitalized for an entire month due to extreme menstrual bleeding. I lost so much blood that I was nearly in a coma, requiring morphine for the pain and numerous platelet and red blood cell transfusions. This experience was extremely challenging, both physically and emotionally.
Due to chronic blood loss, I also suffered from severe anemia. Taking iron supplements was difficult because of the gastrointestinal side effects they caused.
Finding a Solution: Birth Control to Manage Bleeding
At around 20 years old, I started taking Lutenyl, a birth control pill that completely stopped my periods. Thanks to this treatment, my hemoglobin and ferritin levels eventually stabilized when I was 27.
Managing menstruation with Glanzmann Thrombasthenia can be incredibly difficult, but I hope sharing my experience can help other women know that there may be options available. Treatment decisions should always be made with a healthcare team familiar with GT and each person’s individual bleeding history.
Medical Procedures and Glanzmann Thrombasthenia
Living with Glanzmann Thrombasthenia means that medical procedures require careful planning. Thankfully, I have successfully undergone several procedures:
- Wisdom tooth extraction, managed with NovoSeven injections to help prevent excessive bleeding.
- Partial tonsil removal and sinus surgery, performed due to sleep apnea under the supervision of a hematologist.
- Cervical conization in 2021, a preventive procedure after abnormal cervical changes were identified. This operation also went smoothly with appropriate medical supervision.
These experiences have shown me how important it is to have a medical team that understands Glanzmann Thrombasthenia and can properly prepare for the risk of bleeding.
Embracing Life and Staying Active with Glanzmann Thrombasthenia
In recent years, I have learned to accept and adapt to life with Glanzmann Thrombasthenia. As long as I take the appropriate precautions, I try not to let GT prevent me from doing the things I enjoy.
Exercise has become an important part of my life and a form of therapy for me. I believe staying active can be especially valuable when living with a chronic health condition. I listen to my body, make sure my workouts are appropriate for me, and stop if I experience abnormal pain or anything that concerns me.
Of course, bruises are still part of my daily life. When people ask about them, I sometimes joke that I practice boxing. It usually stops any further questions!
Lessons Learned: Alcohol and Staying Active
Like many young adults, I went through a student partying phase, but I quickly realized that alcohol could have serious consequences for me because of Glanzmann Thrombasthenia. I nearly developed a stomach ulcer due to excessive drinking.
I completely agree with Peter’s advice to enjoy life while always paying attention to what your body is telling you.
Exercise has also played a significant role in improving how I feel. Staying active helps me feel stronger, healthier, and more in control. I encourage others with Glanzmann Thrombasthenia to work with their medical team to find physical activities that are appropriate for them and that they genuinely enjoy.
Final Thoughts on Living with Glanzmann Thrombasthenia
Living with Glanzmann Thrombasthenia has not always been easy, but I believe it is possible to lead an active and fulfilling life with GT. By staying informed, making careful choices, listening to my body, and advocating for my health, I have learned how to live life to the fullest.
For anyone newly diagnosed with Glanzmann Thrombasthenia or struggling to manage the condition, know that you are not alone. With appropriate medical care, lifestyle adjustments, and support from organizations like the Glanzmann Research Foundation, it is possible to build a full and active life.
