Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
When I hear the word “pain” I immediately relate. We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt? The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]
Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]
A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]
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 […]
Thomas had a stuffed animal when he was little. “Dog*” went through a lot with us. He was a constant companion, friend and source of comfort. Dog stayed in the hospital, went to clinic visits and traveled with us. We would literally pack factor for an ER visit with one hand and grab Dog with […]
Note: The following is an edited form of a press release from the Centers for Disease Control and Prevention (CDC). The original form of the release can be read here. To read more about pain issues in the hemophilia community, please visit these resources from HFA: Opioids, Addiction, & Bleeding Disorders Pain Toolkit Webinar: Ouch! […]
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 […]
Note: The following originally appeared on MDMagazine.com. New research further supports the understanding that patients with hemophilia suffer from pain and mobility issues, and it went on to uncover which joints are most greatly affected by the condition. Christine Kempton, MD, MSc, from Emory University in Georgia, and colleagues used multiple strategies to find how […]
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 […]
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 […]
The reality is this: my Benny is not self-infusing yet. He is 12 and while he participates fully in the preparation of his infusions, the “poke” is this huge mountain he doesn’t feel prepared to climb yet. I’ll access a vein, hand him the syringe to push his factor and even walk away as he […]
Some things can be measured: flour for cookies, a yard of material, an evaluation at work, and the number of times a heart beats, but what about pain? When your child is in the hospital and is in pain the clinicians will often ask “What number is your pain?” or “Which face is your […]
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.