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Michael and his brother, Patrick, 1972

Never Let What You Can’t Do Define You

Exercise has always been pretty important for hemophiliacs, especially severe hemophiliacs like my brother and I. My parents felt that living an active life would go a long way toward fulfilling that goal. However, exercise is a series of trade-offs. Growing up I was told to, “exercise those muscles, in a less impactful way that […]

Mark

Living With a Bleeding Disorder Across the Decades

Blood Brotherhood is a national program for adult men with a bleeding disorder and provides a sense of community through education and support. The below articles are written by Blood Brothers enrolled in the program and features their stories of what growing up was like during different decades. _____________________________________________ Carl | Severe Hemophilia  B | 1960s – […]

Dads in Action_Mel

Supportive Dad With Creative Solutions

What is a father to do when he has grown up with an intense needle phobia and now discovers his first-born son has been diagnosed with severe hemophilia? Well, in the Mell home we got very creative. Our family has always made it a point to face our daily struggles as a complete unit, relying […]

Project RED

Project RED: Reaching Everyone Directly

A word that we hear frequently right now is “access”—access to quality care, resources, education, community, and other people affected by a bleeding disorder. Our Blood Brothers and Sisters everywhere have these concerns. The recent rise in the number of bleeding disorder organizations around the country (4 new chapters and member organizations) in the last […]

Blood Brotherhood_Matt

Laughing Away the Pain

I was diagnosed with severe Hemophilia A at birth in New Jersey. During my childhood, I moved around often with my family. Needless to say, these experiences have taught me how to adapt. I have been treated at several different hemophilia treatment centers, and every time I changed my center, I had to learn a […]

Blood Sisterhood_Trevor

A Carrier Seen Through Her Father’s Eyes

Having hemophilia is an interesting challenge for an individual. Throughout my life, I have tried to learn as much as I could about this condition and find a way to overcome the adversities it often presents. I thought I had this thing down to a science, but I had no idea what to expect as […]

Blood Brotherhod_Sharon

A Caregiver’s Perspective: My Life As I Know It

My husband has a bleeding disorder called hemophilia. Prior to beginning a relationship with him, I did not have an understanding of hemophilia and the intrusive nature it can have on someone’s life and marriage. My minuscule understanding of hemophilia only consisted of someone “bleeding a lot” if they had an open wound. It was […]

Inhibitor_Family Camp

Inhibitor Family Camp: Our Own Kind of Oz

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

A 504 Plan Can Help Protect Your Child

I’m just like any other father when it’s time for my children to go back to school—so excited! All kidding aside, transitioning back to school can be difficult for everyone if you’re not prepared. When it comes to the extra challenges our kids with bleeding disorders face, the added stress can become an even larger […]

Developing Autonomy vs. Relying on Others

The transition from childhood to adulthood can be full of exciting opportunities to have new experiences and shape one’s own unique individuality. However, adulthood can also come with its own set of challenges, including decreased reliance on parents and taking important steps to reach personal life goals. For young adults living with bleeding disorders, additional […]

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Assisting and Advocating for the Bleeding Disorders Community