BHD Stories

We are always interested in hearing from people with BHD syndrome. If you would like to write your own personal story for this page or take part in an interview, please get in touch at contact@bhdsyndrome.org.

Video Interviews

Charlotte, Denmark

Charlotte was diagnosed with BHD after multiple lung collapses in the family. She discusses how it felt to find a mass on her kidney and how the treatment did not go as expected.

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Kathy, USA

Kathy was diagnosed with two genetic lung conditions. In this interview, she discusses her decision to be tested for BHD, her lung symptoms and why research and awareness of BHD are so important.

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Lenke, Belgium

Lenke was diagnosed with BHD after a collapsed lung during her pregnancy. In this interview, she discusses her pregnancy, genetic testing, her decision not to have IVF and her yearly BHD dates with her mum at the clinic.

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Written Interviews

J, France

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.

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Dennis, USA

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.

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Filippo, Italy

Even in the same family, a BHD Filippo was diagnosed with BHD after developing a collapsed lung. which occurred after surgery for kidney cancer (7 tumours were removed).

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Personal Stories

Debra, USA

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.

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Karin, USA

Karin describes her initial decision not to be tested for BHD and the challenges of being diagnosed with kidney cancer.

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Allison, UK

Even in the same family, a BHD mutation affects each individual differently. Allison shares her family’s experiences with BHD syndrome.
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