Information for People with Hemophilia

This section of our website has tips and information about hemophilia for people affected by the disorder and their families. Finding out that you or your child has hemophilia can be overwhelming. Following are some tips to help you along this journey.

"Do the 5"
Key prevention messages from the National Bleeding Disorder Foundation
Do the 5

Tips for Healthy Living

  1. Get an annual comprehensive checkup at a hemophilia treatment center.
  2. Get vaccinated—hepatitis A and B are preventable.
  3. Treat bleeds early and adequately.
  4. Exercise and maintain a healthy weight to protect your joints.
  5. Get tested regularly for an inhibitor.

Learn About Hemophilia

It is very important for you to take an active role in managing your own, or your child’s, care. To make important decisions, you need to know about hemophilia, understand the treatment options, and then make the best possible choices for your health or the health of your child. If you don’t understand any of the medical terms and concepts, ask your doctor to explain them. It also will help if you take notes and ask questions during doctor visits.

Learn as much as you can about hemophilia. You can start by reading the webpages on Facts and Treatments.

“Steps for Living”

“Steps for Living” is an online program, with information and resources for people with hemophilia and their families, as well as National Bleeding Disorder Foundation (NBDF) and hemophilia treatment center staff.

Boys sitting on parents laps
  • First Step (for children 8 years of age or younger) focuses on learning the basics of bleeding disorders, negotiating parent–provider relationships, and addressing childcare issues.
  • Next Step (for children 9 through 15 years of age) provides information to families about working with schools (in such areas as legal rights, physical education class, and fieldtrips); gaining independence at home (for example, transitioning to home infusions and self-infusions, setting limits, and deciding when to leave your child home alone); and making healthy decisions (for such areas as vacation and travel, organized sports, and nutrition).
  • Step Up (for teens and young adults 16 through 25 years of age) covers topics such as talking about the disorder with others, higher education and job training, gaining independence, maintaining a healthy body, dating, and a family life.
  • Step Out (for adults 26+ years of age) provides information to adults about adherence, aging health issues, living environments, workplace issues, financial health, and navigating the healthcare system.

Find Good Medical Care

Hemophilia is a complex disorder. Good quality medical care from doctors and nurses who know a lot about the disorder can help prevent some serious problems. Often, the best choice is a comprehensive hemophilia treatment center (HTC). An HTC provides care to address all issues related to the disorder, as well as education about the disorder. This care includes an annual comprehensive checkup. The team at an HTC consists of physicians (hematologists or blood specialists), nurses, social workers, physical therapists, and other health care providers, all of whom are specialists in the care of people with bleeding disorders.

A CDC study of 3,000 people with hemophilia showed that those who used an HTC were 40% less likely to die of a hemophilia-related complication than those who did not receive care at such a treatment center.1 Similarly, people who used an HTC were 40% less likely to have to stay in a hospital for bleeding complications.2

Find the HTC closest to you

Enroll in Community Counts

One of the major challenges facing researchers and scientists who work on rare disorders such as hemophilia is lack of access to uniform health data. To address this issue and advance knowledge, CDC supports and coordinates a project called Community Counts. By participating in Community Counts, people with hemophilia can help advance knowledge in this area.

Find a Support Network

In the United States, you can contact the National Bleeding Disorders Foundation (NBDF) or the Hemophilia Federation of America (HFA) to get in touch with families in your area who have been affected by hemophilia. There are local chapters and associations in many areas of the country. By finding support within your community, you can learn more about resources available to meet the needs of families and people with hemophilia. Securing support and community resources can help increase your confidence in managing hemophilia, enhance your quality of life, and assist you in meeting the needs of family members. If you reside outside the United States, you can contact the World Federation of Hemophilia.

Blood Brotherhood

The Blood Brotherhood is a national program from HFA for adult men, diagnosed and living with bleeding disorders.

Two guys

Be Prepared for an Emergency

It is important to develop an emergency plan before disaster strikes. It is especially important for people with bleeding disorders to have a plan in place in order to ensure that the same level of care is maintained in the event of a disaster. CDC has developed a checklist to help you and your family be prepared.

Family Emergency Kit Checklist

References

  1. Soucie JM, Nuss R, Evatt, B, Abdelhak A, Cowan L, Hill H, et al. Mortality among males with hemophilia: relations with source of medical care. Blood 2000;96:437–42.
  2. Soucie JM, Symons J, Evatt B, Brettler D, Huszti H, Linden J, et al. Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Haemophilia 2001;7:198–206.