Getting to know your hemophilia care team
Fact-checked by Hemophilia can affect everyone differently, depending on your symptoms, the type of hemophilia you have, and its severity. This is why your care team should be based on your individual needs.
But regardless of the specific specialists, you want a coordinated, comprehensive, multidisciplinary team of healthcare professionals working together to manage your care, treatment, and everyday life with hemophilia.
Understanding what each specialist does and when to see them can help you stay healthy, active, and emotionally supported.
Hematologist
At hemophilia treatment centers, the hematologist is the specialist who leads and coordinates your day-to-day hemophilia management. They do examinations, review bleeding histories, and order tests.
The hematologist may also prescribe on-demand and preventive therapy and monitor long-term outcomes to minimize risks and complications, such as hemophilic arthropathy. In addition, they should collaborate with your primary care physician.
When to see: for regular monitoring and management of bleeding episodes or complications, periodic checkups, and immediate consultation for acute bleeding
Nurse coordinator
The nurse coordinator acts as a liaison between you and your hemophilia care team.
Typical responsibilities include arranging tests and checkups, referring you to specialists as needed, maintaining records, and monitoring the effectiveness of your hemophilia treatment. They should also be able to advise you on ways to manage hemophilia at home.
When to see: during routine comprehensive care team visits; can also contact them with questions about treatment, injuries, or changes in your condition
Orthopedist
An orthopedist plays a critical role in managing musculoskeletal complications from hemophilia, including chronic joint bleeding and arthropathy.
They may also prescribe braces and supports and do specialized procedures to relieve pain and prevent complications.
When to see: usually for joint problems after bleeding episodes, especially when painful or interfering with daily activities
Physical therapist
A physical therapist can help address mobility and related issues from hemophilia, typically caused by bleeding episodes into joints or muscles. This can include creating personalized exercise programs to help minimize your risk of bleeding or injury.
They can also provide strategies for participating in sports, such as if a teenager wants to play on a team, and doing daily activities more safely.
When to see: typically after bleeding episodes into joints or muscles, or when experiencing pain, stiffness, or reduced mobility. Or if you want to learn more about safe activities and proper exercise techniques.
Social worker
A social worker’s role for hemophilia care is multifaceted, encompassing counseling, emotional support, case management, advocacy, and education.
Social workers can also support you and your family in navigating financial, psychological, and social challenges related to living with hemophilia.
When to see: generally, after being diagnosed with hemophilia, during routine comprehensive care visits, or when dealing with psychological, social, financial, or life-transition challenges
Dentist
A dentist helps maintain good oral hygiene with hemophilia, including preventing dental problems that can lead to bleeding complications.
Dentists should always be in contact with your hematologist to minimize bleeding before any dental appointment, especially when you need procedures such as tooth extractions or gum surgeries.
When to see: every six to 12 months to maintain good dental health and whenever you have tooth or gum issues
Genetic counselor
A genetic counselor can help you and your family better understand hemophilia’s genetic basis — the majority of hemophilia-causing mutations are inherited.
When to see: if needing help with making informed decisions about testing (including explaining test results), family planning, and treatment
Psychologist or mental health counselor
A psychologist can help you and your family members manage the emotional, behavioral, and social challenges of living with hemophilia, including depression and anxiety.
When to see: if dealing with mental health challenges such as depression, anxiety, stress, or difficulty coping with pain, treatment adherence, or joint issues
Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
