Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Dear Addy, This summer, my family has plans to travel and attend camp, in addition to numerous other activities and commitments. Can you recommend resources to help manage my kids’ bleeding disorder while we’re on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]
Do you know those moments when you think, “all is right in our lives today?” We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]
It’s that time of year when boys and girls go to summer camp. Church camp, art camp, band camp, sports camp and yes, hemophilia camps. My idea of camping and “roughing it” is when we stay at a hotel that is not a “suite.” When my oldest son, Julian, was nearing the age of […]
Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]
Dear Addy, My son is about to start summer vacation. While he is excited, I’m concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child’s safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]
Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children’s Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]
“I don’t have a bleeding disorder,” said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). “I know you don’t have a bleeding disorder, but they are allowing siblings to attend. […]
I’d be lying if I said my nerves weren’t through the roof upon entering the gates to the Taylor Family Foundation’s Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. […]
A carrier of the hemophilia gene is a female who has a genetic mutation on one of her X chromosomes. About 1/3 of carriers experience bleeding problems and are often referred to as symptomatic carriers. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Ashley and Sarah are […]
Recently, I saw on Facebook a mom express anxiety about sending her child to hemophilia camp. I also had a lot of anxiety when first sending my son, Micah, to camp. One thing that really helped me was volunteering beforehand as a camp counselor. I spent a week at camp in a cabin with kids […]
By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]
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 […]
Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.
Jim, Gio, and Tim talk about their life as young boys with hemophilia.
Jim and Alex are two young men with hemophilia. They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.
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