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Stormy Johnson

United States

I wasn’t diagnosed with Hemophilia until I was 46 years old despite having a son and several family members diagnosed. I grew up thinking heavy menstrual bleeding was normal, suffering sometimes for 30-45 days at a time. My story includes 4 miscarriages, blood transfusion, bruises and lots of joint swelling/pain. In my family we just said that everyone was a “free bleeder” (whatever that means) and I thought what was happening to me and my sister was normal. After I was diagnosed I became passionate about helping women get diagnosed and treated and now I am the Executive Director of The Women’s Bleeding Disorder Coalition and I am determined to fight for each of us! As women, we often put our needs last because we think someone else needs us more. We have to stand up, find our voice and demand the same treatment men with bleeding disorders receive. If you can’t do it alone then join forces with others.

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