Category: Dateline

Opioids, Addiction, & Bleeding Disorders

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

“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

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

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

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 […]

Project RED: The Sequel

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 and looks […]

Dads in Action Spotlight: Hemophilia Foundation of Northern California

[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

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 to […]

Bullying: A Serious Problem for Kids with a Chronic Condition

Children with special health needs, such as a bleeding disorder, may 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, […]

Brighter Outlook for Community Members Affected by HCV

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 […]