BHD Stories
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.
Roger's Story - 84 Marathons, 1 Parotid Tumour and 50 Years of BHD
Roger had his first lung collapse in the 1970s. Now 50 years later he is sharing his story of BHD including the BHD symptoms he and his identical twin brother have had and his surgery for a parotid tumour.
Vicki and Jon's Story - We Need to Raise Awareness of BHD
Vicki shares the story of her late husband, Jon, who was diagnosed with BHD after his kidney cancer diagnosis. She shares his story and why raising awareness of BHD is so important among doctors.
Debra’s Story – My Birt-Hogg-Dubé Syndrome
Debra Ramsey Adams had multiple lung collapses growing up. However, no one considered BHD until an unrelated scan diagnosed her with kidney cancer.
Karin’s Story – Cancer on both Kidneys
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.