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Talking to Your Provider About Pain

June 4, 2013

People living with a bleeding disorders know a thing or two about pain. Many with聽arthritis report having to wait until their body “loosens up” before they can begin their day. There鈥檚 also the pain you may feel after a particularly busy day when you’ve been on your feet, and that joint that always bothers you […]

Community Voices: Taking Control of Your Health

May 30, 2013

聽鈥淭he only thing standing between you and your goals are the excuses you keep telling yourself as to why you can鈥檛 achieve them.鈥 鈥 Unknown Maintaining a balanced diet, staying physically fit, and managing stress are important for everyone, especially those living with a bleeding disorder. A regular, safe exercise program protects the joints, and […]

Prior Planning Prevents Persistent Problems

May 29, 2013

A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend.聽 Standing at 14,115 feet, it鈥檚 one of Colorado鈥檚 highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful鈥 after admiring the view from the summit.聽 […]

Taking Care of Me

May 22, 2013

Denial is a funny thing. There were several signs that indicated I needed to take some action about changing my habits and improving my overall health. 聽I chose to ignore most of those signs, giving myself excuse after excuse: I just don’t have time to exercise; there was a vegetable on my plate at dinner, […]

Nia Dance Gets Us Moving at Symposium 2013

May 17, 2013

The FitFactor program encourages physical activity for individuals with bleeding disorders to strengthen muscles and joints and help reduce the frequency of bleeding episodes.聽 We understand that choosing an exercise routine is very personal and that a 鈥渙ne size fits all鈥 philosophy just doesn鈥檛 apply when choosing a physical activity program that is right for […]

Taking Off the Super Woman Cape

May 15, 2013

Inspirational quotes appear in lots of different places in our lives: on social media, public service announcements, classroom posters, the bulletin board in the break room at work.聽 Prior to becoming a mom, I rarely gave them a second thought 鈥 they were simply filler and not something I spent much time pondering.聽 As I […]

Infusing Love: The Best Job You鈥檒l Never Get (Monetary) Payment For

May 12, 2013

Oprah Winfrey has been quoted, 鈥淚 always say moms have the toughest job in the world.鈥澛 Everybody knows Oprah is right more often than not. What would the job description for a mom with a child of a bleeding disorder look like?聽 I think maybe it would be something along these lines: Job Title: Mama […]

Poorly Understood: Women and Bleeding Disorders

May 9, 2013

While bleeding disorders like hemophilia and von Willebrand Disease (vWD) affect men and women, these conditions present unique issues for women because of heavy or abnormal bleeding during menstrual cycles and after childbirth. Many areas crucial to the diagnosis and treatment of bleeding disorders in girls and women are poorly understood. According to the CDC, […]

Symposium 2013 Gets Kids Cooking Healthy

May 9, 2013

HFA鈥檚 Symposium provides an opportunity for children with bleeding disorders and their siblings to come together for fun and play.聽 There is also opportunity for the FitFactor team to provide education and fun regarding healthy eating and physical activity.聽 At this year鈥檚 Symposium each family of a 5-12 year old was given a complimentary copy […]

Honoring All Moms, Past & Present

May 8, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

I. Am. Exhausted. (…and Doing the Best I Can)

May 1, 2013

It’s one o’clock in the morning and I just finished infusing Thomas for the seventh time in twenty-eight hours. We spent four of those hours in the emergency room for pain management and I’ve heard, “Mommy!” approximately 635 times today. 聽I. Am. Exhausted. I had to keep Thomas home from school due to a nasty […]

CSL Behring Receives FDA Approval of Kcentra鈩

April 30, 2013

King of Prussia, PA 鈥 CSL Behring announced today that the U.S. Food and Drug Administration (FDA) approved Kcentra鈩 (Prothrombin Complex Concentrate [Human]), the first non-activated 4-factor prothrombin complex concentrate (PCC) for the urgent reversal of acquired coagulation factor deficiency induced by vitamin K antagonist (e.g., warfarin) therapy in adult patients with acute major bleeding. […]

It’s Time for a Family Reunion

April 24, 2013

One of the things that surprised me most about joining the bleeding disorders community was the sense of family.聽 Thomas鈥檚 diagnosis was the first in our family history (although we鈥檇 later find out I鈥檓 a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]

Medicaid Expansion in Your State

April 18, 2013

聽 The Medicaid program is a federal and state partnership to provide health insurance for those who are financially and medically needy. It is a vital safety net in our health care system. Federal law sets a baseline of eligibility categories for states to follow, but states have the flexibility to cover above that baseline […]

A World Away; But That鈥檚 Not So Far

April 17, 2013

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.聽 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 […]

Cookie Theft Leads to Laughter

April 9, 2013

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聽 levity and giggles. For instance, one of the scariest potential bleeds Thomas ever had is […]

Normal is Boring

April 3, 2013

A few months ago, Thomas was just getting over a foot bleed, ironically caused from snow boots that were too tight. (I mean, really? 聽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. […]

Raising Awareness while Raising Children

March 31, 2013

I can鈥檛 say that I was 鈥渁ware鈥 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鈥檛 want to look at […]

Proud Mom of an Alphabet Belcher

March 27, 2013

From the time Thomas was an infant, I had been told hemophilia camp was not to be missed.聽 Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year.聽 There are over eighty summer or family camps for persons with bleeding disorders in […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  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. 聽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. 聽But […]

That Almost Never Happens

March 6, 2013

                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 […]

HFA Honors February 28th As Rare Disease Day

February 28, 2013

        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 […]

The Truth About Advocacy

February 27, 2013

              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.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]

Earning My Mommy Medical Degree

February 25, 2013

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽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 […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽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 crazed) […]

Loving Kindness Meditation (Audio & Video)

February 18, 2013

There are many benefits of meditation. If you practice this guided meditation regularly it can help you stay positive towards yourself and others. It can also help to keep you calm in difficult situations and reduce irritation and anger. Kindness is an antidote for anger and irritation.

Preview of Mom’s Blog: The Power of Unconditional Love

February 14, 2013

                My mother and grandmother always warned me, but I never understood it until I experienced it first hand.聽聽I’m not even really sure it’s fair to say I felt it in the preceding nine months – (it was actually pretty hard to feel much of anything beyond all […]

Flexing Your Online Advocacy Muscle

February 6, 2013

In the early 1980s, when universities and the government were working together to expand the Advanced Research Projects Agency Network (ARPANet), an early version of the Internet, the Massachusetts Institute of Technology issued this warning to users: 鈥淪ending electronic mail over the ARPANet for . . . political purposes is both anti-social and illegal.聽 By […]

How to Win the Battle of the Bugs

February 4, 2013

For most of us, fall and winter means less time outdoors in the fresh air, and more time spent in close quarters with those that we work, play, learn, and live with. It is a great opportunity for cold and flu viruses to work their way from one person to the next.聽 While we all […]

A Stronger and Healthier Body Means Less Bleeding

January 31, 2013

  I have hemophilia. When I was a in school, my parents told me that I couldn鈥檛 play football, baseball, soccer, or other contact sports, because I was a 鈥渂leeder.鈥 I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn鈥檛 going to die […]


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