To the woman still searching for answers:If your bleeding, bruising, or exhaustion has been dismissed as “normal,” trust yourself. So many women with Von Willebrand Disease go years undiagnosed.You are not overreacting.Your symptoms are real.And you deserve answers.

As a woman living with a bleeding disorder, I understand how isolating and frustrating it can feel when you are searching for answers and are dismissed or told your symptoms are “nothing to be concerned about ” Don’t stop advocating for yourself — I knew something wasn’t right, and by continuing to ask questions and speak up, I was eventually heard. Today, there are women, advocacy groups, educational programs, and support communities that understand these struggles and are helping young girls and women gain better access to care and resources, don’t stay silent because the conversation feels uncomfortable because your voice matters , there is strength and change in numbers.

Carriers can be patients too, don’t let yourself be sent away

I was 39 before anyone listened to me regarding my abnormal bleeding. The best advice I was given to me by my mother, who also had the same bleeding disorder, was always tell your friends, teachers, colleagues your blood doesn’t clot properly, as that information may save your life one day. She also encouraged me to wear my bruises with pride and not to hide them away. This is the same advice I have given my daughter. I was diagnosed as BDUC aged 39 and aged 55 diagnosed with an ultra rare platelet function disorder. Having an actual diagnosis had made very little if any difference from being a BDUC.

As a physician, I have seen how often bleeding disorders in women are overlooked and how profoundly a correct diagnosis can change a life. You deserved to be listened to, taken seriously, and offered the right diagnosis, treatment and human support.