A Hemophilia Super Center: The HTC

Just after Rhonda Boni-Burden gave birth to her son, Alex, he was diagnosed with hemophilia. Rhonda wasn’t surprised. Many members of Rhonda’s family had hemophilia and she knew there was a good chance that her son would have it, too. While they wondered what effect the hemophilia would have on their family and on Alex’s future, the Burdens knew they’d be able to cope. Rhonda and her husband swaddled little Alex and took him home from the hospital, armed with diapers and the usual newborn paraphernalia.

The next day, a nurse, a genetic specialist, and a social worker appeared at the Burden’s doorstep. They were from the local hemophilia treatment center (HTC). Sure, Rhonda had a few questions, but she didn’t think all of those people were necessary—and why would her son need a social worker? After all, he only had a bleeding disorder and she knew they’d be able to manage just fine.

But the multidisciplinary team from Rhonda’s HTC—especially the social worker—gradually became an integral part of Alex’s healthcare resources. Their help was priceless to the Burdens. For any family dealing with a bleeding disorder, the HTC can be a tremendous source of support. HTCs have been around for three decades, staffed with professionals experienced in treating hemophilia, including pediatric hematologists, dentists, mental health professionals, physical therapists, and orthopedists. The multidisciplinary team works with each child’s local healthcare professional to coordinate an optimal treatment plan.

HTCs offer a wide range of patient education and support services, from conducting clinical trials to organizing summer camps for children with hemophilia. They also provide:

• Medical treatment
• Patient education and support
• Genetic counseling
• In-services on home infusion
• Counseling
• School training and education