Growing older with hemophilia can feel less like the golden age and more like the rust years. As you age, it is important to advocate for yourself and access the resources at your HTC.
Many families today benefit so much from hemophilia prophylaxis that joint bleeds may be infrequent. Will you know how to recognize and treat a joint bleed when it happens in your child?
The World Federation of Hemophilia held its first Global Research Forum in March to discuss how it can assist in bleeding disorders research around the world.
Some parents in the bleeding disorders community must deal with additional medical and emotional challenges, because their children have a second diagnosis: a developmental disability or a neurobehavioral disorder such as autism or ADHD.
“We want to be part of mainstream media,” says Val Bias, NHF CEO. “Anything that brings more visibility to the foundation and what we’re trying to do helps our agenda.”
For more than 40 years, doctors who care for people with hemophilia have known that therapy with replacement clotting factor can reduce bleeding into joints.
Head bleeds can occur in children and adults with bleeding disorders. The obvious ones are a result of trauma, such as a fall or injury to the head, but some occur spontaneously from no apparent cause.
HTCs are designed to attend to all of a patient’s needs, from the medical and psychological to practical matters such as schooling, insurance and jobs. Learn how they can help your family.
Starting a home-care regimen for hemophilia and other bleeding disorders can be a life-changing experience for families. Here’s what you need to know about storing factor products properly.
Pseudotumors are rare in countries with access to hemophilia treatment, but it’s important for those at risk to know about this potentially life-threatening complication.
Healthy People 2020, the nation’s new 10-year health roadmap, includes a “Blood Disorders and Blood Safety” section for the first time. Goals include increasing von Willebrand disease diagnosis and reducing hemophilia joint problems.
The recommendations are intended to set standards of care for the treatment of hemophilia and von Willebrand disease, and to set guidelines for blood safety.
Many young adults with bleeding disorders are drawn to the healthcare field after undergoing treatment, surgeries and procedures throughout their life.
