Key points
- Being diagnosed with hemophilia can be overwhelming, but there are resources to help.
- Finding good medical care can prevent medical issues.
- There are organizations dedicated to helping people who have bleeding disorders connect with each other.
Overview
It is very important for you to take an active role in managing your own, or your child's, everyday 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 healthcare provider to explain them. It also will help if you take notes and ask your healthcare provider questions during your appointments.
Learn as much as you can about hemophilia. You can start by reading the CDC web pages on facts and treatments.
Do the 5!
Everyday strategies
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.
Find an HTC
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.
Resources and support
Find local resources
In the United States, you can contact the National Bleeding Disorders 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 live outside the United States, you can contact the World Federation of Hemophilia.
Steps for Living
Steps for Living is an online education resource that contains age-appropriate tips and tools for people with hemophilia and their families.
Blood Brotherhood and Blood Sisterhood
The Blood Brotherhood and Blood Sisterhood are programs from the Hemophilia Federation of America for adult men and women who have a bleeding disorder. These groups provide ways to connect with others, share experiences, learn from each other, and find support.
Family Emergency Kit Checklist
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. Check out the Family Emergency Kit Checklist to help you and your family be prepared.