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Factor I Deficiency: A Voice for a Rare Community

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Cazandra_momsblog

Infusing Love: We Keep on Ticking

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance. My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

maryann_max_momsblog

Infusing Love: Family Ties

I’m adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn’t know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the […]

Cathy_hemophilia_infusing

Infusing Love: Overcoming Obstacles

Does anyone really like getting stuck with needles?  I don’t and I only gets labs drawn yearly and have my flu shot once a year.  When you have hemophilia and you have serious needle phobia, infusions don’t go well.  My son Chris, who is now 30, admits he still has severe needle phobia. Chris’s first […]

Patrick_rare bleeding disorder

Qualitative Platelet Disorder: We Just Don’t Quite Fit In

Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don’t know […]

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Infusing Love: A Double Edged Sword

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren’t fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there’s no simple answer to the question. “How’s Thomas doing?” It’s double-edged sword. It’s almost impossible for me to […]

insurance_challenge_Moms Blog

Infusing Love: Too Long to Wait

Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to January 1st.  Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]

Emily_Ryan_MomsBlog

Infusing Love: The Costs of Bleeding Disorders

We’ve all read those statistics that discuss the cost of raising a child. Most I’ve seen report the costs in the $250,000 range. Kids are expensive. Just recently, at Target, our cart contained a variety of things that were not on my list and, of course, I had to actively tell my 4-year-old that he […]

rare_disease_kids

HFA Observes February 29 As Rare Disease Day

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Tracy Moms Blog

Infusing Love: Unplugged

For those of us with children who have their own cell phones, how many times a day do you say, “Get off the phone!” or “Put the phone down!”? But I challenge you to think about yourself: How many things are you doing right now? Other than reading this blog – one, two, three more […]

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Assisting and Advocating for the Bleeding Disorders Community