Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
We are still on the road to self-infusion, and it’s been a long-term journey to his independence. Benny, my 13-year-old who has severe hemophilia is stressed about doing his own needle stick. He is a particularly anxious kid and determinedly marches to his own beat, so letting him infuse at his own pace is the […]
Note: This is part two of a three part series. Click HERE to read part one. Although my Benny is still not self-infusing, the last few months have been a positive journey for us! As noted in my last blog, my 12-year-old has been extremely anxious and stressed about doing his own needle stick. We […]
The reality is this: my Benny is not self-infusing yet. He is 12 and while he participates fully in the preparation of his infusions, the “poke” is this huge mountain he doesn’t feel prepared to climb yet. I’ll access a vein, hand him the syringe to push his factor and even walk away as he […]
By: Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence. He was 6 the first time he self-infused. He did it at our chapter’s family camp with the guidance of some amazing older mentors. In those days things weren’t nearly as organized as they are now; no gaggle […]
As we celebrate America’s Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders. They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]
From the time Thomas was an infant, I had been told hemophilia camp was not to be missed. Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year. There are over eighty summer or family camps for persons with bleeding disorders in […]
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