As BHD is a rare condition it is possible that you, your family or even your doctor have never heard of it before you were diagnosed. We know that this can feel lonely. The BHD community have come together to share their BHD stories and let you know that you are not alone.
Debra Ramsey Adams had multiple lung collapses growing up. However, no one considered BHD until an unrelated scan diagnosed her with kidney cancer.
Karin first found out about BHD syndrome after her dad was diagnosed. She initially decided not to be tested but years later developed kidney cancer.