Glanzmann Thrombasthenia (GT) is a rare bleeding disorder that has shaped my life in many ways. I was diagnosed with Glanzmann Thrombasthenia at just eight months old. Over the years, I have learned how to navigate the challenges of this condition, and I want to share my experience to help others in the GT community.
Life with Glanzmann Thrombasthenia – 2025 Update
Today, at 33 years old, I’ve gained a much better understanding of managing Glanzmann Thrombasthenia. As I’ve gotten older, my body has adapted, making it easier to deal with some of the condition’s complications.
I still experience nosebleeds, bruising, and gum bleeds, but I’ve developed effective ways to manage them:
- Iron supplements help prevent anemia, a common issue for people with Glanzmann Thrombasthenia.
- Daily flossing has reduced gum bleeds, an issue I didn’t anticipate worsening with age.
- Staying active has been crucial—after a period of inactivity, my symptoms seemed to worsen, but regular weight training and movement have helped significantly.
Lessons from Living with Glanzmann Thrombasthenia
I’ve learned two significant things in my twenties that I wish I had known earlier:
- Be cautious with alcohol – While many young adults enjoy drinking, I had a severe gastrointestinal (GI) bleed, which I suspect was caused by alcohol. If you have Glanzmann Thrombasthenia, it’s best to limit or avoid alcohol altogether.
- Exercise daily—After stopping physical activity after high school, I noticed my symptoms worsened. When I started weightlifting, my body felt more vigorous, and I seemed to recover faster when medical issues did arise.
My Glanzmann Thrombasthenia Diagnosis Story
I was born on April 13, 1992, and from birth, there were signs of Glanzmann Thrombasthenia—signs we didn’t recognize at the time. I was a large baby, delivered with forceps, and had significant bruising. When my mother noticed bruising on my shins at eight months old, my pediatrician referred us to a hematologist at Baystate Medical Center in Springfield, Massachusetts.
After platelet aggregation studies, I was diagnosed with Glanzmann Thrombasthenia.
Challenges and Treatments for Glanzmann Thrombasthenia
Throughout my life, my biggest challenges with Glanzmann Thrombasthenia have been:
- Frequent nosebleeds – Some lasted days despite trying laser treatments, cauterization, nasal sprays, and pressure techniques.
- Anemia – I’ve required red blood cell and platelet transfusions for severe bleeding episodes, including a GI bleed at age six.
- Unexpected bleeding incidents – One of the most unusual bleeds I had was when I lacerated my tonsil eating potato chips—it required medical intervention to stop the bleeding.
My family also faced challenges, including a Department of Social Services report when I was a baby. Because Glanzmann Thrombasthenia can cause excessive bruising, my parents were wrongly accused of child abuse before my diagnosis.
Finding Support in the Glanzmann Thrombasthenia Community
One of the most life-changing moments for my family was discovering the Glanzmann’s Research Foundation (GRF) and connecting with others who have GT, which provided invaluable support and resources.
We also decided to store my youngest sibling’s cord blood, hoping that future research would cure Glanzmann Thrombasthenia. With ongoing advancements in gene therapy and platelet research, I remain hopeful that a breakthrough is coming.
Final Thoughts on Living with Glanzmann Thrombasthenia
For those newly diagnosed or raising a child with Glanzmann Thrombasthenia, know that while the condition presents challenges, it is possible to live a whole, active life. From sports like swimming, tennis, and weight lifting to staying proactive about iron levels and physical fitness, small lifestyle choices can make a big difference.
If you or someone you know is affected by Glanzmann Thrombasthenia, contact organizations like the Glanzmann’s Research Foundation—community support is invaluable.
I hope sharing my story helps others navigate their journey with Glanzmann Thrombasthenia.
