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 from a gastrointestinal hemorrhage, but doctors were unable to determine the cause. Despite these complications, I remained an active child—though I was unable to play contact sports like football. Instead, I practiced contemporary dance, which was 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, hoping it helps others struggling with similar challenges.
I had my first period at 12 years old, and at first, the bleeding was managed with Gonapeptyl, an injectable treatment. However, over time, this method stopped working, leading to severe bleeding episodes and multiple hospitalizations.
One of the most challenging moments 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 hemoglobin transfusions. This period of my life was extremely challenging, both physically and emotionally.
Due to chronic bleeding, I also suffered from severe anemia, but taking iron supplements (ferritin tablets) was difficult due to stomach-related side effects.
Finding a Solution: Birth Control to Manage Glanzmann Thrombasthenia
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 finally stabilized when I turned 27. Managing menstruation with Glanzmann Thrombasthenia can be incredibly difficult, but I hope my story reassures other women looking for solutions.
Medical Procedures and Glanzmann Thrombasthenia
Living with Glanzmann Thrombasthenia means every medical procedure must be handled with caution. Thankfully, I have successfully undergone:
- Wisdom tooth extraction – Managed with NovoSeven injections to prevent excessive bleeding.
- Partial tonsil removal and sinus surgery – Performed due to sleep apnea under the supervision of a hematologist.
- Cervical conization (2021) – A preventive procedure due to signs that could lead to cervical cancer. This operation also went smoothly and under proper medical supervision.
Embracing Life and Staying Active with Glanzmann Thrombasthenia
I have learned to accept and adapt to life with Glanzmann Thrombasthenia in recent years. As long as I take safety precautions, I rarely hold myself back from doing what I love.
For the past five years, I’ve been trained, and for the past year, I’ve been I’ve regularly. Exercise is my therapy, and I believe it’s even moit’sssential for those with a chronic health condition. I always listen to my body, ensure my workouts are safe, and stop immediately if I feel any abnormal pain.
Of course, bruises are still a part of my daily life (partly because I’m very fortunate 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 had my student partying phase, but I quickly realized that alcohol had severe consequences for someone with Glanzmann Thrombasthenia. I nearly developed a stomach ulcer due to excessive drinking. I completely agree with Peter’s advice to have fun but always listen to your body.
Exercise has also played a significant role in improving my health. Staying active helps me feel stronger, healthier, and more in control—which is why I highly encourage others with Glanzmann Thrombasthenia to find a physical activity they enjoy.
Final Thoughts on Living with Glanzmann Thrombasthenia
At 28 years old, I believe you can lead an active and fulfilling life with Glanzmann Thrombasthenia. The journey hasn’t always been easy, but by staying informed, making wise choices, and advocating for my health, I’ve learned to live life to the fullest.
For anyone newly diagnosed with or struggling to manage Glanzmann Thrombasthenia, know that you are not alone. A healthy and active life is possible with the proper medical care, lifestyle adjustments, and support from the GRF.
