Living with a Rare Bleeding Disorder
My name is Daniel Beyer, but my friends call me Dan. I was diagnosed with Glanzmann Thrombasthenia (GT) as a child, a rare platelet disorder that prevents blood from clotting properly.
For much of my early life, I spent countless days in the hospital, dealing with frequent and severe bleeding episodes. However, from the age of twelve through my mid-thirties, I experienced relatively few complications. Unfortunately, as I reached my late thirties and early forties, my symptoms worsened.
Major Health Challenges with Glanzmann Thrombasthenia
In 1999, I underwent a total gastrectomy (stomach removal) after spending fourteen months hospitalized due to persistent gastrointestinal (GI) bleeding. Since then, my most serious bleeding episodes have been related to GI bleeds and small intestine bleeds, requiring countless platelet and red blood cell transfusions.
Currently, my bleeding is more manageable, with frequent nosebleeds, gum bleeds, minor cuts, and bruising. Despite these challenges, I remain active and committed to living my whole life.
Education, Family, and Overcoming Obstacles
Glanzmann Thrombasthenia made my early education difficult. I spent so much time in the hospital that I was eventually homeschooled. However, after moving to a Detroit suburb, I could return to high school and graduate—a milestone I wasn’t sure I’d reach at one point.
While attending college, I met my incredible wife, Chris, a registered nurse who has been my rock and support system for over 31 years. We have three children (ages 22 to 26) and one granddaughter. Thankfully, none of them have Glanzmann Thrombasthenia.
Medical Treatments and Managing Glanzmann Thrombasthenia
Over the years, I’ve tried multiple treatments to manage GT-related bleeding:
- NovoSeven (Factor VIIa) – I started receiving this treatment a little over a year ago, and it has been a game-changer.
- Amicar (Aminocaproic Acid) – I’ve been on oral Amicar for years, and when hospitalized, I receive it intravenously to help reduce bleeding episodes.
Staying Active with Glanzmann Thrombasthenia
For much of my life, doctors advised against recreational activities due to my bleeding risk. However, I’ve learned that staying active is crucial for overall health and well-being. Today, I enjoy:
- Golfing, fishing, and canoeing
- Whitewater rafting (low-class rapids preferred!)
- Bowling in a league with my wife, Chris
- Playing softball in the past for my church team
The Importance of Family and Support
Chris and my family have stood by my side through every medical challenge through every medical challenge. Their unwavering support has given me the strength to push through every setback.
Despite the challenges of living with Glanzmann Thrombasthenia, I remain hopeful, resilient, and committed to living a long and fulfilling life.
I am still here—and I intend to be for many years to come.
