Date: Wednesday, December 11, 2024
Time: 1:00pm – 2:00pm ET

TOPIC:

Learn about HEMGENIX from the patient perspective

OBJECTIVE:

Michael will share his personal experience after receiving HEMGENIX

RECOMMENDED AUDIENCE:

HTC providers, social workers, administration and support staff

SPEAKER:

Michael – Common Factors Advocate Hemophilia B

My Life at a Glance – At the age of four, I was diagnosed with hemophilia B factor IX deficiency. My parents told me that this disorder would limit me and that I would most likely have to progress through life with caution. So, at a very young age, I was forced to make an adult decision. I had to either learn how to manage

 my hemophilia or accept the possible limitations that were awaiting a severe hemophiliac. When I was a kid, I made sure to not let hemophilia get in the way by staying on top of managing it. It was hard to accept help from anyone because I wanted to do it on my own. It was my superpower, not theirs.

My previous local support group was amazing. They organized scholarships and had activities that were safe for hemophilia patients. It was a close-knit community. I even volunteered there! After finding the right treatment for me, I have noticed myself living a more stress-free lifestyle; I no longer have to infuse a minimum of twice a month to maintain my factor levels.

My Message to the Community – Hemophilia is our superpower. It’s time to don that cape and advocate for yourself.