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Top Hemophilia News Today News

The emotional toll of caring for a child with hemophilia

Hollywood, Florida · Hollywood

The emotional toll of caring for a child with hemophilia

Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve always been in awe of these mothers. Imagine having to insert a needle into your squirming 2-yea…Read Article

More preventive treatment options needed, researchers say

More preventive treatment options needed, researchers say

Prophylactic (preventive) treatment for hemophilia A and B is generally more effective than on-demand treatment in reducing the frequency of bleeding, but the benefit is not as clear in patients who have developed inhibitors that limit how well replacement clotting factors work. That’s according to real-world data from explorer6 (NCT03741881), a non-interventional study sponsored by Novo Nordisk that ran across 33 countries. The study followed p…Read Article

Times when we can be parents and not caregivers

United States · United States

Times when we can be parents and not caregivers

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we take on new job positions, Julian, 28, and Caeleb, 19, are focused on preparing for their next grand adventure, separating storage items from those they want handy. Julian hopes to be gone for …Read Article

Breaking News Topics Related to Hemophilia News Today

Managing hemophilia and, through conversation, mental health

In 2000, actor Tom Hanks starred in the movie “Cast Away.” His character, Chuck Noland, traveled the world as a systems analyst for FedEx, and his plane crashed in the South Pacific. He was on a deserted island, and his only connections with the world were the FedEx packages that washed ashore. One of the packages contained a volleyball. With a bloodied hand, he threw the volleyball in a moment of frustration. The imprint left a crude image of a…United States · United States Read Article

Caregiving is a lifelong learning process

Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with confidence, use tools skillfully, and project authority. But I’ve never felt fully comfortable calling myself an expert. Not in my job, and especially not in my role as a carer to my husband, Jar…Read Article

Little testing done for girls at risk of hemophilia carrier...

A single-center U.S. study found relatively little genetic testing was done for girls with a 50% risk of being a hemophilia carrier — people with the altered gene who don’t have hemophilia themselves but can pass it to their children — over a four-year period in Washington state. Specifically, the testing — followed by genetic counseling — was conducted for about one-quarter of young girls offered such services at Seattle Children’s Hospital, ac…Mississippi · Mississippi Read Article

People with bleeding disorders are living longer, but are we prepared?

I never used to think about aging because I was too focused on surviving the present: heavy periods, chronic anemia, and endless insurance hurdles. But lately, I’ve started to feel the shift. My joints take longer to recover. Mornings come with stiffness. Even the swelling from a minor finger bleed lingers for weeks. The truth is, I’m aging with hemophilia — and no one ever told me what that would look like. Our community is experiencing somethi…United States · United States Read Article

Campus resources are helping my son find the right dorm

My youngest son, Caeleb, received great news last week from his college, the University of New Mexico: A letter confirmed that he has a dormitory room for school next year. When he showed the letter to my wife, Cazandra, and me, we shouted for joy. Everything associated with our upcoming move to Las Cruces, New Mexico, from the Albuquerque area appeared to come together. I’ll be the lead pastor at a new parish while Cazandra works as a hospice c…Las Cruces · Las Cruces Read Article

Blood group O not tied to inhibitor risk in children with severe hem A

Children with severe hemophilia A with blood group O are not at increased risk of developing neutralizing antibodies against factor VIII (FVIII) replacement therapy, a study found. The study, “Blood Group O Does Not Increase the Risk of Inhibitors in Severe Haemophilia A: Data from the PedNet Study Group,” was published in Haemophilia. It was sponsored by several pharmaceutical companies, including Bayer AG, Novo Nordisk, CSL Behring, Pfizer, Sa…Read Article

Beqvez shows long-term safety, efficacy in adults with hemophilia B

Beqvez (fidanacogene elaparvovec-dzkt), a one-time gene therapy developed by Pfizer that was formerly approved for hemophilia B, was found to be safe and effective in reducing bleeding episodes and the need for factor replacement therapy in a small group of men. That’s according to results from a long-term Phase 2 trial (NCT03307980), which followed 14 adult men with severe or moderately severe hemophilia B for up to six years. “These results of…Sydney, Australia · Sydney Read Article

Parent caregivers must fill their well with self-care

I recently hosted a retreat for United Methodist deacons from New Mexico and Arizona, where we gathered to share our ministries, develop new relationships, and connect. Deacons are called to serve beyond the church walls, and I’m always amazed at the work we do in the world. At the retreat, chaplains, nonprofit directors, teachers, and mental health professionals represented a few of our many professions. One deacon had developed an especially p…New Mexico · New Mexico Read Article