Hemophilia: from Mayo Clinic patient, to employee, to Connect moderator
Like many members on Mayo Clinic Connect, my medical journey has been a long, hard, and winding road. It all started at birth when I was diagnosed with Hemophilia, a rare genetic bleeding disorder. In short, my blood does not clot normally because it lacks sufficient blood-clotting proteins (clotting factors).
Small cuts, scrapes, and bruises are not the real problem. The greater health concern for a hemophiliac is deep bleeding episodes inside their body, especially in the knees, ankles and elbows. We refer to internal bleeding as bleeds. A bleed is hard to explain, but I compare it to the feeling of a sprained joint.
Early treatments for hemophilia involved whole blood transfusions from healthy donors. Before blood was screened thoroughly, many hemophiliacs ended up contracting HIV/AIDS as a result of tainted blood donations. Unfortunately, my uncle, who was also a hemophiliac, contracted HIV as a result of bad blood and passed away when I was only five.
Treatment changed in the late 80s when factor replacement therapy was introduced. Rather than a whole blood transfusion, an intravenous injection of the missing protein was introduced as a way to boost clotting. Fortunately for me, I was born when the factor replacement therapy was available. What wasn't ideal was that common treatment practices in the 80s and early 90s were to only treat when injury occurred rather than regular treatment (prohylaxis) to prevent injury. As a result I sustained a lot of internal bleeds in my knees, ankles, and elbows as a child.
Long-term injuries I sustained as a result of repeated internal bleeding:
- End-stage arthritis in both left and right ankle
- Total right knee replacement
- Left-ankle fusion
Luckily for me, I share the same birthplace as Mayo Clinic; Rochester, Minnesota. A bonus to being born with hemophilia near the Clinic is having direct access to hemophilia treatment at a clinic that specializes in the rare. I continue to receive top-notch care in the Hemophilia Treatment Center at Mayo Clinic. The coordinated care between the hematologists and orthopedists throughout my life of injury has indeed allowed me to stay as active as possible despite my injuries.
It seems fitting that my first position after graduating from Winona State University is not only working for the healthcare facility I have been a patient of my entire life, but supporting the division of hematology and working alongside my physicians!
I also have the privilege of moderating groups on Connect I have personal experience in, such as:
Today, I play sled hockey for the Rochester Mustangs, cycle, lift weights, and spend much of my time playing with my son, Griffin.
I am able to do these things because of my personal resiliency, support from my wife and family, and the care I continue to receive from Mayo Clinic. I use these experiences and challenges I've faced to guide my approach as a moderator. I hope growing up with a rare disease and chronic conditions provide me the empathy needed to help you, the members, Connect with others who understand what you are going through. I know firsthand how much it can mean to meet someone else who can simply nod their head, saying, "yep, I get it."