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.
Julia was diagnosed with BHD at 34. In this interview, she shares how her skin symptoms have impacted her both physically and mentally.
Kathy was diagnosed with both BHD and cystic fibrosis. In this video interview, she discusses her decision to be tested for BHD, her lung symptoms and why research and awareness of BHD are so important.
Lenke was diagnosed with BHD after a collapsed lung during her pregnancy. In this interview, she discusses her pregnancy, genetic testing, her decision not to have IVF and her yearly BHD dates with her mum at the clinic.
Paije was diagnosed with BHD in her 20s and required surgery for a collapsed lung. In this interview, she discussed what it felt like to have a collapsed lung, recovering after surgery and USA health insurance.
Dr Bob was diagnosed with BHD after a routine scan accidentally picked up a mass on the top of his kidney. In this interview, we discuss how being a doctor affects his perspective of BHD and how we can raise awareness of BHD among doctors.
Claudia was diagnosed with BHD after having multiple kidney cancers. In this interview she shares her BHD journey.
Debbie was diagnosed with BHD 40 years after her first lung collapse. Her diagnosis of BHD led to her doctors spotting another type of cancer on a routine lung scan.
Effie worked as a research nurse caring for people with BHD. In 2011/2012 she volunteered to take part in a clinical study where they incidentally found that she had BHD.
J was diagnosed with BHD 10 years after noticing the first white bump on her skin. She shared her BHD story from diagnosis to surgery and we discussed the importance of raising awareness.
Maree P had her first lung (pneumothorax) collapse as she won a cross-country running race. 50 years on she shares her experience of being diagnosed with 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 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.