Maybe you’ve just been diagnosed, or maybe your baby has just been diagnosed with a bleeding disorder. Maybe you were diagnosed at birth, and you’ve lived with a bleeding disorder your entire life. Maybe you are somewhere in between. No matter where you fall along that spectrum, knowledge is power. For more information on the types of bleeding disorders, click here.
If you think you might have a bleeding disorder, you’ll want to consult an expert. Hematologists are experts in bleeding disorders. A hematologist can diagnose your bleeding disorder, provide guidance for managing your bleeding disorder, and prescribe the treatments and therapies to ensure your best possible outcome.
Bleeding disorders are complex and often require collaboration with other health professionals, such as nurses, physical therapists, geneticists, and social workers. To facilitate comprehensive care for patients with bleeding disorders, the United States federal government provides some of the funds that support hemophilia treatment centers (HTCs) across the country. HTCs help coordinate your care with other medical experts to treat all aspects of your bleeding disorder. Please visit www.cdc.gov to find an HTC near you.
Where Do You Start?
Knowledge is power: Learn about your bleeding disorder. There is a wealth of information available online, and your hematologist and other HTC staff can teach you about your diagnosis, the symptoms, how to recognize a bleed early, and what to do when you suspect you are having a bleed or when an injury occurs. You will also find a lot of information on this website [and in the HFA Learning Center, our e-learning program**insert later]. Some of the areas we recommend include the following:
- Back to school kit
- Bleeding disorders in the workplace
- Transitioning to college or into the workplace
- Pain management
- Emergency preparedness (A CDC resource)
Get connected: You are not alone! Even though bleeding disorders are rare, you have blood brothers and sisters, fellow parents, and siblings of those living with your same disorder. HFA is a patient-oriented organization, and throughout our website you will find programs that can help you connect with others in the community. We recommend you visit the following areas in our website:
- HFA’s annual educational Symposium
- Find your local HFA member organization
- Get involved in HFA’s programs and services
- Hear other community members’ stories
- Check out our latest edition of Dateline Federation
Types of Bleeding Disorders
While all bleeding disorders have a lot in common, such as some symptoms and the complications of bleeding, they are also all different. Please click on the bleeding disorder you are interested in learning about.
- Hemophilia A (Factor VIII [FVIII] deficiency)
- Hemophilia B (Factor IX [FIX] deficiency)
- Hemophilia C (Factor XI [FXI] deficiency)
- von Willebrand’s disease (types I, II, III, aVWS, and pseudo-VWD)
- Factor II (FII) deficiency
- Factor V (FV) deficiency
- Factor VII (FVII) deficiency
- Factor X (FX) deficiency
- Factor XII (FXII) deficiency
- Idiopathic thrombocytopenic purpura (ITP)
- Acquired platelet function defects
- Congenital platelet function defects
- Congenital protein C or S deficiency
- Disseminated intravascular coagulation (DIC)
- Glanzmann disease