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Hemophilia and Taking an Active Role in Your Healthcare

How to get what you need from yourself, from your treatment plan, and your healthcare team.

Medically reviewed in June 2021

Hemophilia is the term used for a group of genetic disorders that cause lower than normal levels of clotting factors. Clotting factors are proteins that circulate in the blood that help prevent bleeding and stop bleeding when it occurs.

As a result, people with hemophilia are at risk of excessive bleeding (both internal and external). Medical procedures, such as surgery and dental work, are also more complicated and riskier for people who have hemophilia—excessive bleeding can occur during and after such procedures.

Most people who have hemophilia are male, and in most cases the disorder is present at birth. The most common form of hemophilia is Type A (also called Hemophilia A and classic hemophilia). Type B hemophilia is less common and acquired hemophilia (a type that occurs later in life) is very rare.

Treating hemophilia
There is no cure for hemophilia, but the condition can be managed. A treatment plan will depend on the type of hemophilia a person has, the severity of the hemophilia (which depends on how much clotting factor, if any, is produced), and a person’s lifestyle. A treatment plan may include:

  • Medications that replace clotting factor
  • Lifestyle considerations, such as wearing protective equipment when participating in sports or activities where an injury can occur
  • Being prepared in case you experience an injury or bleed

The recommended approach to treating bleeding disorders like hemophilia is working with a comprehensive care team, preferably through a hemophilia treatment center.

A comprehensive care team for hemophilia will include a variety of specialists that a person with hemophilia may need, such as hematologists, nurses, physical therapists, orthopedists, and dentists. It will also include social workers, who can help people with hemophilia navigate things like insurance and the finances associated with healthcare.

Prioritizing your health
It’s important to recognize that you are an essential part of your own healthcare team. Some strategies that can help you take an active role in your healthcare include:

  • Stay on top of your treatment. This includes all your healthcare appointments, including things like checkups, receiving an infusion of replacement therapy, and dentist appointments.
  • Communicate. Advocate for yourself by asking questions, raising concerns, and being upfront about what’s going on in your life. Even simple changes like a different schedule or a new hobby can impact your care, and may be worth discussing.
  • Prioritize a healthy lifestyle. Exercise and nutrition are essential to your overall health, and to avoiding health conditions that can be complicated by hemophilia, such as being overweight. It’s also important to avoid unhealthy habits, such as consuming alcohol in excess, which can be dangerous to people who have hemophilia.
  • Stay organized. Keep a personal healthcare record. This can be very helpful if you need to see a new healthcare provider or contact your insurance company.

Hemophilia is a lifelong condition, and your needs, priorities, and goals may change throughout your life. However, change can happen gradually. Check in with yourself from time to time, and make sure you are getting what you need from yourself, from your treatment plan, and from your healthcare team.

Medically reviewed in June 2021.

Sources:
Cleveland Clinic. "Hemophilia."
Centers for Disease Control and Prevention. "What is Hemophilia?"
William Beau Mitchell and Christopher Walsh. "Hemophilia." Atlas of Diagnostic Hematology, 2021. Chapter 18.
Shilpa Padar Shastry, Rachna Kaul, Kusai Baroudi, and Dilshad Umar. "Hemophilia A: Dental considerations and management." Journal of International Society of Preventing & Community Dentistry, 2014. Vol. 4, Supplement 3.
National Hemophilia Foundation. "Hemophilia A."
Elsevier Point of Care. "Clinical Overview: Hemophilia A."
National Organization of Rare Diseases. "Acquired Hemophilia."
Centers for Disease Control and Prevention. "Treatment of Hemophilia."
National Hemophilia Foundation. "Comprehensive Medical Care."
Johns Hopkins Medicine. "Johns Hopkins Hemophilia Treatment Center."
Steven Bryson. "Awareness Key to Proper Treatment Adherence in Hemophilia, Study Says." Hemophilia News Today. April 29, 2020.
The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook. "Nutrition."
Marta Figueiredo. "Excess Weight, Obesity Affecting More Hemophilia Patients, Study Shows." Hemophilia News Today. September 10, 2018.
Christina Frank. "Drinking and Bleeding Disorders." HemAware.
University of Minnesota. "Create a Personal Health Record."

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