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Infusing Love: Meet Heather, a Brand New Hemo Mom

  My life was flipped upside down nearly 3 weeks ago when I became a hemophilia mom. To say that I was shocked is a true understatement. What I thought were little bruises because I had shoved my son Maddox into his bumbo seat, turned out to be a disorder that would affect my baby […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Bleeding Disorders Advocates Host Patient Fly-In

  Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

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Infusing Love: Hit the Road, Jack

  Every hemo mom has the day she must send her child off on an overnight school trip, trusting that she has done everything she can to prepare her child for the responsibility of being on their own. My time came a few weeks ago when my son went to Orlando with his Sing Out […]

Dear Addy: Life Insurance

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you’ve found, your health status […]

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Infusing Love: A or B (Arthritis or Bleed?)

Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]

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Infusing Love: Life Imitates Art

When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]

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Fit Factor: Step up your Grilling Game this Summer

With summer just around the corner, we’ll soon be able to pull out those grills for our favorite outdoor meals. Whether you’ve got a taste for meat, fish, seafood, tofu or vegetables, grilling is one of the healthier cooking methods. Cooking food on a grill allows excess fat to drip away from the food, without […]

Dear Addy: Symposium

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]

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Infusing Love: Changes

As parents of a nearly twenty five year old son, my husband George and I have enough to write a book about being the parents of a child with severe hemophilia B. There are so many ups and downs raising Michael over the years. Our most recent up and down has been the transition of […]

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