A Guide to Taking Your First Steps with Confidence

Being diagnosed with a bleeding disorder—whether it’s hemophilia, von Willebrand disease, or a rare clotting factor deficiency—can bring a rush of questions, fears, and uncertainty. You’re not alone. Understanding what comes next is the first step toward managing your condition and living a full life. Here’s what to do:

1. Learn About Your Specific Condition

No two bleeding disorders are exactly the same. Learn the name of your diagnosis, which clotting factors are involved, and how it affects your daily life. Trusted sources like the National Hemophilia Foundation offer detailed, reliable information.

2. Find a Hematologist or Hemophilia Treatment Center (HTC)

Look for a specialist who understands bleeding disorders. HTCs provide comprehensive care—including medical treatment, physical therapy, and psychosocial support—all under one roof.

3. Build Your Care Team

Your team may include a hematologist, nurse, social worker, and even a genetic counselor. Surround yourself with professionals who listen and work with you, not just treat you.

4. Connect with a Community

Support makes all the difference. Join an advocacy group or local chapter (like HFA or NHF) where you can meet others who understand your journey.

5. Create a Care Plan

Work with your doctor to create a personalized plan. This includes treatment options (like prophylactic factor infusions), lifestyle adjustments, and how to respond to bleeds.

Remember: A diagnosis doesn’t define you—it empowers you to take charge of your health.