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.
In this blog, Roxana shares her experience of attending our recent symposium. As someone living with BHD, she hoped to share her story, along with the barriers and challenges she faced throughout her journey.
Jenny Marlé-Ballangé received a grant from the BHD Foundation to attend a Health Democracy training course. Jenny tells us more about the work she has done and the advice she would give to other patient advocates.
Having a rare lung condition can feel scary. Having a rare lung condition during the COVID-19 pandemic adds another layer of complexity. Here from a BHD expert Stefan Marciniak and Anna Marie Dowling (who has BHD) about BHD and COVID.
Did you have a lung collapse for no apparent reason? Did it take years for you to be diagnosed with BHD? Here Annita reflects on her BHD story and how lung surgery has changed in the last 30 years.
CF discovered they had BHD after a lung CT scan following a diagnosis of a rare type of sarcoma called epithelioid PEComa (perivascular epithelioid cell tumour). Read their story. Since PEComas are so rare, we also interviewed Dr Andrew Wagner.
Dieke was recently diagnosed with BHD, after initially being diagnosed with LAM. In this interview she shares her diagnosis journey, how she manages her condition and what advice she would give to others in similar situations.
Joanna got married 7500ft above sea level at the top of a mountain. She didn’t realise the pain in her shoulder was her lung collapsing and that she had a rare condition called Birt-Hogg-Dubé (BHD) syndrome.
Katty had been a travel artist and wanted to know how BHD would affect her ability to travel the world. Watch our discussion about flying and BHD.
Lea completed her first Ironman in 2021 at the age of 57. You’d never know she’d had multiple lung collapses and lung surgery and, as it turned out, a rare inherited condition.
Rebecca was diagnosed with BHD after several lung collapses, multiple visits to the hospital and an incorrect diagnosis of anxiety. In this video, she shares her personal story of BHD.
In 2013 Cassandra was diagnosed with BHD after genetic testing. Since then, she has experienced a collapsed lung and had surgery. Read on to learn about her diagnosis and how the condition affects her daily life.
Charlotte lives in Denmark and was diagnosed with BHD after multiple lung collapses in the family. Kidney screening found a cancerous mass on her kidney. The surgery didn’t go as expected.