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Dear Addy: Marketplace

July 22, 2013

Dear Addy, I work for a small business. Health insurance through my company for my family costs $1,000 a month. At the end of the year the monthly premium will jump to $1,300 a month and we can鈥檛 afford to pay that much. On top of this, for emergency care and hospitalizations we have to […]

Don’t Be Afraid To Ask Questions!

July 18, 2013

As a patient or a parent of a child with a bleeding disorder, you may, at some point in time, have the opportunity to make a decision to participate in a clinical trial for a new factor product, a research project, or the genotyping project. This decision should not be taken lightly. All your questions […]

FitFactor Video: Running/Walking Safety

July 17, 2013

Running and walking are often deemed safe activities for individuals with hemophilia. They are both great forms of exercise and聽just about anyone can do them, all you really need to get started is a good pair of sneakers. However, running and walking are not without risk. In this second video of our running/walking series, we […]

Up, Up, and Away!!!

July 17, 2013

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

FitFactor Video: Running/Walking – Getting Started

July 12, 2013

Running and walking are often deemed safe activities for individuals with hemophilia.聽聽They are聽frequently recommended because聽they don’t have聽take a lot of time or cost a lot of money, but聽can make a big difference in how you feel and in聽your overall health. 聽Remember, healthy bodies bleed less! In this first video of our running/walking series, we introduce […]

Self Reliance To the 鈥淢ax鈥

July 10, 2013

By:聽 Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence. 聽He was 6 the first time he self-infused. 聽He did it at our chapter鈥檚 family camp with the guidance of some amazing older mentors. 聽In those days things weren’t nearly as organized as they are now; no gaggle […]

The Red, White & Blue Of Hemophilia Independence

July 3, 2013

As we celebrate America鈥檚 Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.聽 They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

Adding More Mommy Friends to the Playgroup

June 26, 2013

When my oldest was first born, I was part of a weekly playgroup; a group of five to seven moms that would sit around a plate of cut-up vegetables and lemonade.聽 Through a fog of sleep deprivation, we exchanged stories of introducing our babies to solid food and comparing which brand of diapers worked best.聽 […]

Mommy, I Think You Might Need RICE for That

June 19, 2013

                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, […]

Superhero D.A.D: Delightfully Awesome Dude

June 12, 2013

On my husband鈥檚 Twitter profile, he describes himself as 鈥淔ather, Entrepreneur, Righteous Dude, Caped Crusader Fighting the Evil Private Health Insurance Empire.鈥澛 I鈥檇 testify those all true assessments of him.聽 He鈥檚 a pretty good guy. I think most fathers in the bleeding disorders community are.聽 They fight for justice for their kids just as hard […]

Family Fun Weekend – Bleeding Disorders Association of NE New York

June 11, 2013

On Saturday, May 25th, the Bleeding Disorders Association of Northeastern New York hosted their annual Family Fun Weekend. The weekend was filled with fun, fitness, entertainment, exhibits and education for the whole family. The FitFactor Program of HFA sponsored the physical activities and a yummy interactive nutrition session. The video below captures some of the […]

Your Choice. Your Voice.

June 5, 2013

  Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment […]

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 […]


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