I was diagnosed with Glanzmann Thrombasthenia (GT) at just eight months old. Now, at 34 years old, I have spent my entire life learning how to manage this rare inherited bleeding disorder, recognize bleeding symptoms, navigate medical care, and still live an active and fulfilling life.
Through my own experiences and years of involvement in the Glanzmann Thrombasthenia community, I have learned that living well with GT often comes down to understanding your body, recognizing your individual bleeding risks, maintaining your overall health, and having a medical team that understands the disorder.
What Is It Like to Live With Glanzmann Thrombasthenia?
For me, living with Glanzmann Thrombasthenia means dealing with frequent nosebleeds, easy bruising, gum bleeding, anemia, and occasional unexpected bleeding episodes.
The severity of GT can vary considerably from person to person, so my experience will not be the same as everyone else’s. However, after more than three decades of living with Glanzmann Thrombasthenia, I have learned what helps me manage my symptoms and reduce some of the everyday problems associated with the condition.
How I Manage Glanzmann Thrombasthenia Symptoms
One of the most important things I have learned is that taking care of my overall health can make living with Glanzmann Thrombasthenia easier.
Iron supplementation has helped me manage iron deficiency and anemia associated with blood loss. Consistent dental care, including daily flossing, has also significantly reduced my gum bleeding.
Exercise has become another important part of my life. Regular exercise and weightlifting have helped improve my strength, fitness, and overall health.
After becoming inactive for several years following high school, I felt that managing my health became more difficult. Returning to an active lifestyle helped me feel physically stronger and better prepared to deal with the challenges that come with GT.
Exercise with a bleeding disorder should always be approached based on your individual bleeding history and guidance from your healthcare team. What works for me may not be appropriate for everyone with Glanzmann Thrombasthenia.
Glanzmann Thrombasthenia and Alcohol
Another major lesson from my experience has been understanding and avoiding unnecessary bleeding risks.
In my twenties, I experienced a severe gastrointestinal (GI) bleed that I believe was connected to my alcohol use at the time. Because Glanzmann Thrombasthenia already puts me at increased risk of bleeding, avoiding alcohol is something I personally take very seriously.
My experience does not mean everyone with GT will have the same reaction to alcohol, but it reinforced how important it is for me to consider how everyday choices may affect my bleeding risk.
How I Was Diagnosed With Glanzmann Thrombasthenia
There were signs that something was wrong from the time I was born, although they were not immediately recognized.
I was delivered using forceps and experienced significant bruising as a baby. Later, my parents noticed unexplained bruising on my legs and knew something wasn’t right.
I was eventually referred to a hematologist at Baystate Medical Center in Springfield, Massachusetts. After platelet aggregation testing, I was diagnosed with Glanzmann Thrombasthenia at eight months old.
GT is a platelet function disorder. People with Glanzmann Thrombasthenia generally have platelets but lack normal function of the GPIIb/IIIa receptor, which is necessary for platelets to aggregate effectively and form a stable platelet plug.
Bleeding Complications I Have Experienced With GT
Throughout my life, I have experienced many of the bleeding problems associated with Glanzmann Thrombasthenia.
These have included severe nosebleeds, significant bruising, gum bleeding, anemia, blood transfusions, and emergency bleeding episodes.
Some bleeding events have also come from situations most people would never expect to become medical emergencies. In one particularly unusual incident, I accidentally cut my tonsil while eating potato chips and needed medical treatment to control the bleeding.
Experiences like these have taught me that GT can be unpredictable. Something that would cause minor bleeding in another person can sometimes become much more significant for someone with Glanzmann Thrombasthenia.
Unexplained Bruising Before My GT Diagnosis
One of the more difficult parts of my family’s experience happened before doctors knew I had Glanzmann Thrombasthenia.
The unexplained bruising on my body was severe enough that my parents were wrongly suspected of child abuse.
For families of children with undiagnosed bleeding disorders, unexplained bruising can be frightening and confusing. My family’s experience is one reason I believe awareness of rare bleeding disorders among parents and healthcare professionals is so important.
Finding the Glanzmann Thrombasthenia Community
One of the most meaningful developments for my family was connecting with the Glanzmann Research Foundation and eventually meeting other people affected by GT.
Glanzmann Thrombasthenia is extremely rare. Growing up with a condition that very few people understand can feel isolating, not only for the person with GT but also for their family.
Connecting with other people who understood nosebleeds, bruising, hospital visits, transfusions, and the uncertainty surrounding serious bleeding made a tremendous difference for us.
Today, advocacy and education about Glanzmann Thrombasthenia have become an important part of my life. I want patients and families to have access to the information and community that my family needed when I was diagnosed.
Can You Live a Normal Life With Glanzmann Thrombasthenia?
Yes. Glanzmann Thrombasthenia can create serious challenges, but GT does not have to define what you are capable of doing.
After 34 years of living with Glanzmann Thrombasthenia, I have learned how important it is to understand my bleeding disorder without allowing it to control every aspect of my life.
I exercise, lift weights, work, travel, and live an active life while remaining conscious of my individual bleeding risks.
Everyone’s experience with GT is different, and treatment and activity decisions should be discussed with a hematologist or healthcare team familiar with the condition. But having Glanzmann Thrombasthenia does not mean giving up on living a full and meaningful life.
My goal in sharing my experience is to make reliable information about Glanzmann Thrombasthenia easier to find and to help patients and families realize that they are not alone.
After living with GT for more than three decades and becoming deeply involved in the Glanzmann Thrombasthenia community, I continue to learn from patients, families, researchers, hematologists, and my own experiences. By sharing those lessons, I hope to improve awareness, education, and support for everyone affected by Glanzmann Thrombasthenia.
