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Dateline Stories

A Patient’s Perspective on a Fresh Osteoarticular Allograft

April 11, 2017

By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a “target joint” since I was in the fifth grade. By the time I reached […]

How I Cope With Pain

January 5, 2017

Note: This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]

What is Helping Hands?

January 5, 2017

By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA’s Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]

Dateline: Ask the CDC – What’s von Willebrand Disease?

October 19, 2016

Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls’ symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]

¡Juntos somos más resistentes! — Together we are Resilient

October 13, 2016

By: Kyle McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here   For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]

The Ins and Outs of BMI

June 1, 2016

By Michelle Morath “Healthy Bodies Bleed Less” continues to be the mantra of HFA’s FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]

Hemophilia: Not an Excuse to Be a Couch Potato

April 25, 2016

By Michael Zolotnitsky, PT, DPT Growing up with hemophilia made waking up with bruises, joint pain, or the inability to bear weight on my ankles a normal occurrence. Time and time again, my mother had to drive me to the local hematology clinic to have factor infused. I did not feel like a normal child. I […]

Recognizing Bleeding Disorders Awareness Month

April 1, 2016

Note: The following appears in our Spring 2016 edition of Dateline Federation. Please see the full issue for all the amazing community support shown for Bleeding Disorders Awareness Month! For the past 30 years, the bleeding disorders community has unofficially recognized Hemophilia Awareness Month during the month of March. The name originated from a proclamation made by […]

Opioids, Addiction, & Bleeding Disorders

January 25, 2016

It is recognized in the bleeding disorders community that opioid medications can be a helpful addition to the treatment plan for patients experiencing refractory acute pain, as well as for those with long-standing chronic pain  resulting from joint disease. Opioids as a class of drugs are used for many types of pain. According to the Centers for Disease Control and […]

Listening To The Needs Of Women

November 17, 2015

“Throughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can’t have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.” — Wendy Owens, […]

How a Second Grader with Hemophilia Copes with Pain

June 9, 2015

Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family’s experiences with HFA with hopes that other families can learn from their experiences. How did you find […]

My Journey with Pain

May 19, 2015

Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]

Women Are Not Just Carriers

May 12, 2015

While some women experience bleeding symptoms monthly or even more frequently, other women may go years before bleeding issues are recognized, making a diagnosis even more difficult. Jennifer was a hemophilia carrier for 33 years before she had her first bleed. She shares the emotional and physical pain she endured as she struggled to get […]

Spring Training: Time To Get Off The Couch

March 19, 2015

Spring is the time for new opportunities. Days are getting longer, trees are budding, and those cool breezes are finally turning warm. Spring is an opportunity to revitalize ourselves and get back into action after winter’s long hibernation. With more opportunities for exercise and outdoor activity, spring is a great time to get off the […]

Project RED: The Sequel

February 3, 2015

NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]

Dads in Action Spotlight: Hemophilia Foundation of Northern California

December 15, 2014

[glossary_exclude] The recent addition of Dads in Action (DIA) to the Hemophilia Foundation of Northern California (HFNC) has been instrumental in encouraging our dads to connect, participate and learn from each other. While we worried how successful we would be (Would dads who didn’t know each other open up, share, or even show?!), we were […]

The Silent “Carriers” of Hemophilia

November 13, 2014

Women have been the silent “carriers” of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA’s Blood Sisterhood program was established […]

Bullying: A Serious Problem for Kids with a Chronic Condition

October 9, 2014

Children with special health needs such as a bleeding disorder can be at an increased risk of being bullied because of issues like physical vulnerability, social skill challenges, and intolerant environments. Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or […]

Brighter Outlook for Community Members Affected by HCV

October 8, 2014

Hepatitis C (HCV), often referred to as the “silent killer”, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]

Hemophilia is Only a Handicap if You Let it Be

August 21, 2014

Below is an excerpt from our one-of-a-kind Dads’ book, Dads in Action: Real Stories from the Bleeding Disorders Community. This book is free to all dads who sign up for our Dads in Action program. ___________________________________________________ I am 38 years old. I live with severe Hemophilia A, but I don’t suffer from it. I have […]

Never Let What You Can’t Do Define You

August 8, 2014

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 […]

Living With a Bleeding Disorder Across the Decades

August 7, 2014

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 – […]

Supportive Dad With Creative Solutions

June 13, 2014

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: Reaching Everyone Directly

May 29, 2014

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 […]

Laughing Away the Pain

May 23, 2014

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 […]

A Carrier Seen Through Her Father’s Eyes

April 9, 2014

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 […]

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

January 9, 2014

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: Our Own Kind of Oz

December 20, 2013

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

November 19, 2013

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

November 12, 2013

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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