Debra shares her experience being diagnosed and living with Birt-Hogg-Dubé Syndrome (BHD). The account discusses the challenges of being diagnosed correctly with a rare condition.
Share your story
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.
BHD Community Facebook Group
The Birt-Hogg-Dubé Syndrome Facebook group is a community lead group and is another fantastic resource for reading about different BHD experiences.
Babara has been living with the title of “Birt-Hogg-Dubé syndrome” for many years. . Clinically, she is confirmed as “Birt-Hogg-Dubé” but molecularly the blood results are NEGATIVE. So she asks the question ‘WHAT AM I?’.
Karin describes her initial decision not to be tested for BHD and the challenges of being diagnosed with kidney cancer.
Even in the same family, a BHD mutation affects each individual differently. Allison shares her family’s experiences with BHD syndrome