Birt-Hogg Dubé (BHD)Syndrome
Fact Sheet
- Possible symptoms of BHD:
- Fibrofolliculomas, that are benign tumours or growths in the hair follicle that appear as skin papules. They are most commonly found on the face, neck, upper chest and upper back, and can also be found on the ear and ear lobe.
- Lung cysts and spontaneous pneumothorax (collapsed lung)
- Kidney cysts, tumours and kidney cancer
- The prevalence of BHD is about 1 in 200,000, although current research suggests that BHD might in fact be much more common than hitherto understood
Information
Much useful information for patients with Birt-Hogg-Dubé syndrome can be found on the BHD Foundation website
Birt-Hogg-Dubé syndrome (also known as BHD) is a hereditary condition named after the three Canadian doctors that first described it in 1977 – Arthur R. Birt, Georgina R. Hogg, and William J. Dubé.
At first, BHD was thought to be a skin condition after skin lesions were found on the faces and necks of several members of an extended family. It is now known that BHD can also cause lung cysts, collapsed lungs, and kidney cancer. BHD mainly affects adults, with symptoms usually appearing in a person’s 20’s and 30’s
The BHD Foundation and its supporting organisation Myrovlytis Trust were inactive from 2017 until recently February 2021, when Dr Anna Webb was appointed as the new Charity Manager.
Support for BHD today can be found with the VHL UK/Ireland Facebook Group and the International Birt Hogg Dube Syndrome Group