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What We Learned About Inhibitors and Where We Need to Go

September 23, 2020

A Summary of HFA鈥檚 Blood Brotherhood & Families Inhibitor Survey Data BY DEBRAN TARVER, STAFF WRITER Many people with hemophilia A or B or type 3 von Willebrand disease (vWD) treat by infusing clotting factor concentrates into their veins, which helps form clots, and stop or prevent bleeding episodes. Of those who infuse with clotting […]

Turned Away

September 23, 2020

Hemophilia organization hopes to change current Medicare reimbursement that leads aging hemophilia patients struggling to enter nursing facilities BY SONJI WILKES, STAFF WRITER During National Hemophilia Foundation鈥檚 Washington Days, NHF announced The Hemophilia Skilled Nursing Facility Access Act had been introduced in both the House and the Senate. This critical legislation will rectify a longstanding […]

Cornfields, Camping and Camaraderie

November 19, 2019

Nationally-known cycling event creates amazing memories for Team Resilience participants By: Emily Roush-Bobolz,聽Staff Writer While Hemophilia Federation of American has been hosting the Gears for Good National Ride from West Virginia to Washington, D.C., for eight years, the organization had a larger vision 鈥 use existing athletic and competitive events around the country to raise […]

La Menstruacio虂n es un Proceso Natural como Cualquier Otro

November 19, 2019

Por: Andy Anderson y Martha Boria, escritores del personal 鈥淎hora eres una mujer鈥. 鈥淎qu铆 est谩n las toallas higi茅nicas鈥. 鈥淧uedes sostener una toalla de agua caliente en el est贸mago por los dolores鈥. 驴Suena esto familiar? Para muchos de nosotros, hablar de per铆odos era solo algo que pod铆amos hacer con mam谩. No lo discutimos en la escuela […]

Medicare 101: Who’s Paying for Your Care?

November 19, 2019

By: Kimberly Ramseur, Staff Writer With all the talk about health care financing, it is easy to get confused and overwhelmed with all the information being disseminated. If an individual falls under one of the following, he or she may be eligible for Medicare, a national health insurance program administered by the Center for Medicare […]

Advocate Finds Her Voice with New Council

November 19, 2019

Advocacy Leadership Council member shares her experience at HFA鈥檚 2019 Patient Fly-In By: Natalie Parker, Guest Writer I was nervous before walking into a Congressional office. The U.S. Capitol is huge! I didn鈥檛 know what to expect and I wasn鈥檛 sure they would listen to me. After all, legislators and their staff meet with numerous […]

Understanding FDA Drug Recall Procedures

November 19, 2019

It is important to pay attention when a product is recalled, but with all the different sources of information, and the different types of recalls, it can be confusing. Recalls, designed to protect the public鈥檚 health, are used as a way to deliver information to consumers in an expeditious manner. A recall is an action […]

Executive Corner

November 19, 2019

Dear Friends, For nearly 11 years Hemophilia Federation of America has had the same leadership guiding and taking the organization where the community has requested. Throughout this time, HFA has grown by leaps and bounds, not only in the size of the organization, but more importantly in what we are able to offer the community […]

A Patient鈥檚 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 鈥渢arget joint鈥 since I was in the fifth grade. By the time I reached […]

How I Cope With Pain

January 5, 2017

Note:聽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鈥檚 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鈥 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 […]

隆Juntos somos m谩s resistentes! 鈥 Together we are Resilient

October 13, 2016

By: Kyle聽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 鈥淗ealthy Bodies Bleed Less鈥 continues to be the mantra of HFA鈥檚 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聽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聽Dateline Federation.聽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聽medications can be a helpful addition to the treatment plan聽for patients experiencing refractory acute pain, as well as聽for those with long-standing chronic pain 聽resulting from joint聽disease. Opioids as a class of drugs are used for many types of聽pain. According to the Centers for Disease Control and […]

Listening To The Needs Of Women

November 17, 2015

鈥淭hroughout 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鈥檛 have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.鈥 鈥 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鈥檚 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鈥檚 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鈥檛 know each other open up, share, or even show?!), we were […]

The Silent 鈥淐arriers鈥 of Hemophilia

November 13, 2014

Women have been the silent 鈥渃arriers鈥 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鈥檚 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.聽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 鈥渟ilent killer鈥, 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, 鈥渆xercise 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聽and support. The below articles are written by Blood Brothers enrolled in the program and features their stories of what聽growing up was like during different decades. _____________________________________________ Carl | Severe Hemophilia 聽B | 1960s – […]


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