It takes on average 4 years for a rare disease patient to reach a diagnosis and the BHD community is no different. Nearly every person we talk to describes the challenges of being diagnosed with BHD and how many doctors have never heard of it.
To raise awareness of BHD among doctors we have created a leaflet dedicated to the symptoms of BHD. We hope that this resource will prompt doctors to consider BHD when investigating patients with collapsed lungs, lung cysts, skin bumps and kidney cancer. The leaflet also signposts to genetic test centres so that doctors have the information to correctly refer their patients.
We will be distributing the leaflet at key conferences and events, and you can help too by sharing it with your doctors.