What Are Some Interesting Facts About Hemophilia – Do you know about HTCs? Hemophilia Treatment Centers (HTCs) in the United States – as well as a large network of treatment centers worldwide – are beacons of hope and help by providing holistic, integrated care for people with bleeding disorders.
People with hemophilia, which means their blood doesn’t clot as well as it should, are usually diagnosed at a very young age. The disease, which varies in severity, requires lifelong care to prevent bleeding, joint damage and other problems. For anyone with hemophilia, an HTC can be a one-stop shop for their medical needs.
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“People with hemophilia and other bleeding disorders come to the Hemophilia Treatment Center to access comprehensive care and resources,” said Shirley Abraham, MD, director of the Ted R. Montoya Hemophilia Treatment Center at the University of New Mexico Health System. “Here, they can meet with doctors, nurses, a physical therapist and a social worker; Blood is drawn to check clotting factor levels, presence of inhibitors, and cell counts; and receive important education and support.”
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The global network of hemophilia treatment centers includes 141 federally funded treatment centers and programs in the United States, as well as HTCs in Africa, the Middle East, Europe, Asia, and Oceania. According to a study by the US Centers for Disease Control, people with hemophilia are 40 percent less likely to be hospitalized for bleeding complications if they use hemophilia treatment centers. In fact, annual visits to a hemophilia treatment center are number 1 on a five-point list of “Do the 5!” Developed by the National Hemophilia Foundation in association with the US Centers for Disease Control.
Thanks to medical advances, hemophilia has evolved into a manageable chronic condition. But both hemophilia A and B remain complex diseases that require careful, consistent monitoring and healthcare. This is where HTC comes in.
The youngest patients may need to visit a hemophilia treatment center every three to six months. As the person ages, a visit is usually recommended once a year, as well as if there are any concerns or bleeding episodes. A primary focus of the physicians, nurses, and therapists at the Hemophilia Cure Center is to provide age-appropriate counseling and care.
“The conversation will be very different with a 40- or 50-year-old patient coming in for the first time with the parents of a child,” says Dr. Abraham. “Early on, we’ll talk about how to recognize early signs of bleeding, the safe way to get vaccinations, how to trauma-proof cribs and homes, creating a safe play area and the importance of medical bracelets, for example. As a child grows, we teach parents “Educate what to do when the child starts swimming and walking and eventually how they can safely participate in sports. We’ll also teach the child how to self-infuse [clotting] factor.”
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In the pediatric population, hemophilia treatment teams aim to prevent injury and long-term joint damage, a common complication. As a patient progresses, the importance of prophylactic treatment and always taking prescribed medications is constantly emphasized to prevent breakthrough bleeding. UNM’s Hemophilia Treatment Center also offers programs for pediatric patients such as self-infusion bootcamps, family weekends and summer camps.
As people age, they may need help coping with the health-related challenges of aging, including additional chronic conditions. Again, HTCs can aid in coordinated care and collaboration among medical providers.
“As patients live longer and are more physically active, we’re also helping them manage common late-life procedures like joint replacement,” says Dr. Abraham. “This is a new direction in hemophilia and bleeding disorder care.”
HTCs naturally serve as an important source of data collection to learn more about disease. The centers help patients learn about the latest treatments such as gene therapy. Many patients and their families are inquiring about their possible eligibility for this type of treatment.
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“Hemophilia treatment centers are always leading the way in bringing forward a potential treatment or therapy,” explains Dr. Abraham. “Larger studies requiring collaboration between multiple centers will be needed before some become standard of care. “
The goal of an HTC is to help people manage their hemophilia so they can achieve and maintain the best possible quality of life. That means supporting both patients and caregivers and connecting them to each other, Dr. Abraham said.
“I really encourage people to go to a hemophilia treatment center,” she adds. “There are so many resources available they might not otherwise find, and they can build a community and a support system.”
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