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Mom's Blog_World Hemophilia Day

A World Away; But That’s Not So Far

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.  There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

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Cookie Theft Leads to Laughter

Most moms of children with bleeding disorders have a sick and twisted sense of humor. Many of us use humor as a coping mechanism. Honestly, I don’t know how I could have managed all these years without many moments of  levity and giggles. For instance, one of the scariest potential bleeds Thomas ever had is […]

Mom's Normalcy

Normal is Boring

A few months ago, Thomas was just getting over a foot bleed, ironically caused from snow boots that were too tight. (I mean, really?  Snow boots?) After a week of not being able to do his nightly chore of taking out the kitchen trash, I declared his foot healed enough to take out the garbage. […]

Hemophilia Awareness Month Graphic

Raising Awareness while Raising Children

I can’t say that I was “aware” of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn’t want to look at […]

Mom's Blog_Camp 2

Proud Mom of an Alphabet Belcher

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 […]

Mom's Blog_Siblings

Siblings: Unaffected, but certainly AFFECTED

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions.  The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat.  But […]

Thomas Wheelchair

That Almost Never Happens

                At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]

Rare Disease Day Logo

HFA Honors February 28th As Rare Disease Day

        The Hemophilia Federation of America (HFA) will join the National Organization for Rare Disorders (NORD), and others around the world in observing Rare Disease Day on February 28, 2013. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the […]

Mom's Blog_Advocacy

The Truth About Advocacy

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the […]

Sonji and Thomas

Earning My Mommy Medical Degree

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom! In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]

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Assisting and Advocating for the Bleeding Disorders Community