Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Investigational SPK-8011 moving to Phase 3 As of the July 13 data cutoff, 12 participants in the Phase 1/2 trial have received a single administration of investigational SPK-8011, including two at a dose of 5×1011 […]
It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan’s holder and I could never transition him to the other side of the needle. I don’t think I wanted him to do it either, since […]
With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I’m afraid […]
A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]
Dear Addy, I’m applying for jobs and am nervous that the marks on my arm from infusing will present awkward questions. What should I do? Signed, Marked Dear Marked, This is a valid fear. For people unfamiliar with the need to infuse medication verses swallow it, the marks on your arms left by multiple infusions […]
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 […]
It is a common refrain to hear medical professionals comment on how well Logan does with his infusions. This is usually echoed in a, “He is such a champ,” or “How did you get to be so brave,” or the sadder version, “I wish my older patients were this good.” I am proud of Logan; […]
I’ve seen a recurring question in the bleeding disorders community a lot in the past few weeks:, “Will I ever get used to sticking/poking my kid?” The answer is yes and no. Think about it — there is nothing normal about sticking your child with an IV needle or accessing their port to infuse them […]
Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as “…distinct from traditional pharmacies in coordinating many aspects of patient care […]
My non-hemophilia mom friends have often say to me, “I just don’t know how you do it. I just can’t imagine raising a child with hemophilia.” I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.” Earlier this summer, this very conversation played out between myself and HFA […]
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 […]
In May of this year Max, gave me factor for the first time. I was getting ready for HFA’s first regional Gears for Good bike ride in New Hampshire. In preparation, I was out riding my bike ten or more miles every chance I got. Max would often drop me in one spot and then […]
The early 1990’s marked a period of action in the hemophilia community. In 1990, Ryan White died at the age of 18 and in 1992, Ricky Ray, one of three brothers infected with HIV/AIDS died at the age of 15. During this time, the hemophilia patient community began to independently ask their own questions and […]
I am notoriously klutzy. I always have been. My father used to joke that he should have named me “Grace” because I managed to spill a drink every Sunday at dinner. When I was a kid, I would walk into walls, and growing up in the South, […]
Mark Antell talks candidly about his hemophilia and hepatitis C.
Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.
Pam helped Ann through the diagnosis of her son’s bleeding disorder.
The HFA offers the Dads in Action Program as an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit. The program focuses on building strong family ties within the context of having a bleeding disorder. Program participants include both fathers of […]
The Cleghorn family shares their story of having a young child with hemophilia. They talk about prophylaxis treatment and transitioning from a portacath to to a vein.
By Laveane Lovelady, Damascus, AR Download Laveane’s Story This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A. My blood pressure had gotten dangerously high […]
Download Rick’s Story By Rick, Jessie’s Dad My son Jesse was born on Valentine’s Day in 2001. He is now 4 years old and has severe hemophilia. It is hard to believe the amount of emotions that have transpired in the short period since his birth. Life leads us down many paths. The path of […]
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