Taking Charge of Your Health

Taking charge of your health includes knowing about your bleeding disorder. What you know and do can affect your health. Most of the people you will meet in life will know very little about bleeding disorders. It's up to you to stay informed. You can prevent many of the problems linked with bleeding disorders.

Hemophilia is rare - only about 33,000 people in the United States have it. Other bleeding disorders, such as Bernard-Soulier Syndrome and Glanzmann Thrombasthenia, are even rarer. Even though von Willebrand Disease is believed to occur in 1 in every 100 people, most people have never heard of it. You will meet doctors and nurses from outside your treatment center who have had very little experience with bleeding disorders. You may have to go to an emergency room where they don't know you. They may not have the equipment to quickly find out what kind of bleeding disorder you have or if you have an inhibitor. They are going to rely on you to know that information.

The treatment for bleeding disorders has changed over the years and will continue to evolve. Stay informed about what's new and know about your personal health. Then you'll be in a good position when you discuss your treatment with your doctor. You can take more responsibility for your own care.

It's easy to panic at first because there is so much to remember. Relax. You cannot learn everything at once. Some of the things you need to know, like the type and severity of your bleeding disorder, won’t change. Other information, like how your joints are doing, will change. Ask questions about your condition every time you have a check-up at your treatment center.