We are always interested in hearing from people with BHD syndrome. If you would like to write your own personal story or take part in an interview please get in touch at firstname.lastname@example.org.
J was diagnosed with Birt-Hogg-Dubé syndrome (BHD) 10 years after noticing the first white bump on her skin. She shared with us her BHD story from diagnosis to surgery and we discussed the importance of raising awareness
Dennis was diagnosed with BHD after his brother developed kidney cancer. He discusses the effect it had on his family and how it brought them closer together.
Filippo was diagnosed with BHD after developing a collapsed lung. which occurred after surgery for kidney cancer (7 tumours were removed).
Written Interviews with researchers, clinicians and members of the BHD community