Hearing a diagnosis of a bleeding disorder or any other chronic condition can be very difficult. It’s important to know that bleeding disorders are manageable and people can lead a full life by taking a few precautions.
Many people experience shock and fear when learning about their own bleeding disorder or finding out that a family member was diagnosed with a bleeding disorder. These feeling are normal and will lessen as you learn, gain experience and feel some control over the situation.
Where do I start?
- Find a hematologist in your area – Bleeding disorders are treated by hematologists. In the United States, there are federally funded Hemophilia Treatment Centers (HTC) in almost every state. A list of centers can be found on the Centers for Disease Control website .
- Learn about bleeding disorders – There is a wealth of information available online and your physician will teach you about the disorder, the symptoms, how to detect a bleed early, and what to do when you suspect a bleed or when an injury occurs. You will also find a lot of information on this website. Some of the sections we recommend include:
- Get connected – You are not alone! Even though bleeding disorders are rare, there are other people living with the 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: