If you’ve been diagnosed with a bleeding disorder, you likely work with a comprehensive care team to manage your condition. Your care team is a group of medical professionals who coordinate treatment and prevention techniques, from prophylactic factor infusion to physical therapy.
Many people with hemophilia receive the majority of their care at a hemophilia treatment center, or HTC. Note that HTCs may also treat bleeding disorders outside of hemophilia, including von Willebrand disease. The World Federation of Hemophilia has compiled standards of care for HTCs, which emphasize the importance of regular medical visits and careful record keeping.
If you live far away from an HTC, you’ll still see a team of medical professionals who coordinate helping you manage your disorder. Your care team doesn’t need to be in the same place at the same time, as long as there’s regular communication between the health professionals taking care of you.
Here are the professionals who may be part of your bleeding disorder care team. They work together to provide you with care and support.
- Hematologist: Your hematologist is a doctor who specializes in bleeding disorders. Usually board-certified in internal medicine, hematologists spend an additional two years after medical school studying disorders of the blood. Your hematologist works with your other doctors, including your primary care provider and orthopedist (if you have one) to monitor your factor infusions, medications and other aspects of your overall health.
- Nurse: You will most likely see your nurse(s) more often than you see the other members of your care team. Nurses manage your daily care, including your pre- and post-operative care if you need surgery. Those who specialize in hemophilia care may work as nurse coordinators at hemophilia treatment centers (HTCs), helping connect patients with the resources they need.
- Dentist: Dental care is important to your health, whether you have a bleeding disorder or not. That said, taking care of your teeth with a bleeding disorder requires a little bit more planning. Your dentist coordinates with your hematologist to give you the appropriate medications or topical treatments to prevent causing a bleed during your dental visit.
- Orthopedist: Orthopedists are doctors who specialize in treating the bones and joints of the musculoskeletal system. They may refer you to a physical or occupational therapist who can recommend activities to prevent and rehabilitate joint damage related to a bleed.
- Social Worker or Psychologist: Bleeding disorders, like many chronic conditions, don’t just affect the body. They can have a profound effect on your emotional well-being and happiness. That’s why it is important to understand your overall mental health status as well as your physical health. Patients may seek assistance from professionals for emotional or psychological support, whether they’re adjusting to a recent diagnosis or have been diagnosed for many years.
- Physical Therapist or Occupational Therapist: Your physical therapist helps you maintain your strength and flexibility after an injury or bleed. He or she will determine where your body is strong or weak, and design a program of exercises and/or stretches to help develop the weaker muscles. Physical therapy is especially important after a bad bleed; Hemophilia of Georgia notes that an out-of-shape joint is more likely to bleed again.
- Pharmacist: Your pharmacist also plays a role in your care. A qualified specialty pharmacist works with your doctor to supply you with the prescribed medication to manage your condition. Specialty pharmacies like MedPro Rx adhere to a strict schedule of federal requirements in order to ensure that your clotting factor concentrate and other medical products are delivered to you safely and on time.
Your care team may not be limited to the roles listed above. Depending on your needs, the severity of your bleeding disorder and whether you live in an urban area, you might also work with a hepatologist (a doctor who specializes in the liver and surrounding organs), an immunologist (a doctor trained to diagnose and treat conditions of the immune system), a vocational counselor or another health professional.