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.

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.

“Basic Concepts”

“Basic Concepts” is a workbook to help you learn about hemophilia. It includes information on:

• The basics of hemophilia
• Principles of comprehensive care
• Bleeding episodes
• Complications of hemophilia
• Dental and oral care
• Physical activity
• Home therapy and infection control
• Family issues
• Advocating for your child
• Health research opportunities

“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 Hemophilia Foundation and hemophilia treatment center staff.

• 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 Hemophilia Foundation or the Hemophilia Federation of America 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 program from the Hemophilia Federation of America for adult men with hemophilia and von Willebrand disease. Blood Brotherhood provides several ways to connect with others:

• Online Forum
  The online forum is an Internet message board for adult men only. Register to participate in the Blood Brotherhood online forum.
• Face-to-Face Meetings
  These meetings bring Blood Brothers together to connect and learn. Topic experts and activities are presented, addressing a variety of health and wellness issues.
• National Blood Brotherhood Calls and Webinars
  Topic experts provide education and facilitate discussions and question and answer sessions around key topics that Blood Brotherhood members are asking about, such as financial health, retirement planning, and joint replacement. For more information or to be added to this meeting list, please contact: programs@hemophiliafed.org.

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.