bruises under my armpits from being picked up. I fell down a
lot when I was learning how to walk and went to the hospital every time I had a bleed. Finally, the doctor inserted a central line and arranged for home care nurses to do my infusions when needed.
"Eventually, I was able to join the swim team."
“Camp was where I learned how to self-infuse. I loved everything about camp, and I still kind of miss it. Now I’m interested in going back as a counselor.”
“Just as I have learned how to manage
my hemophilia, I have learned to manage my diabetes, and I am able to enjoy life, not letting hemophilia or diabetes define me.”
“Being involved with the community
gives me a sense of comfort. I can share my past experiences to help others and meet other people with stories of their own.”
“On prophylactic treatment, I’ve learned that
luck favors the prepared.”
Not all activities are appropriate for all people. Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities. If an injury occurs, contact your physician or treatment center immediately for the appropriate treatment.
You should be trained on how to do infusions by your hemophilia treatment center or your healthcare provider.
Using prophylaxis with FEIBA for his treatment routine helped Loren lower his bleeds.
Discover what it means to find your True Identity. Get involved in
meetings, and get inspired by patients and caregivers who share their
stories of managing bleeds.
Want to find other types of support? Check out our Tools & Resources section.