Dear Members of the *Smith* Family,
I am writing to you to tell you that I have been diagnosed with Birt-Hogg-Dubé syndrome
(BHD). BHD is a genetic condition that runs in families, meaning that some of you might have it too.
People with BHD can get:

Skin bumps (called fibrofolliculomas) on their face, neck and upper body;

Lung cysts;

Collapsed lungs (pneumothorax) and;

Kidney cancer (renal cell carcinoma).
Some people with BHD have died from kidney cancer, but in most cases this is because the cancer wasn’t found until after it had spread. It is important to find out if you have
BHD, and then get regular kidney scans if you do. If you get regular kidney scans and have any tumours removed before they spread, then it is unlikely to be fatal.
Again, a collapsed lung is unlikely to be fatal. But it is important to know if you are at risk so that you know the signs of a collapsed lung and get treatment quickly if you need it.
BHD normally only affects adults, but you should be aware that a few children have had a collapsed lung.
BHD is caused by mutations in the Folliculin gene, and the only definite way to know if you have it is to have a genetic test. *The mutation I have is called [insert mutation], which is the mutation you might have too.* Please show this letter to your doctor so that they know which genetic test to order.
If you would like to find out more, the BHD Foundation has more information about BHD on their website: www.BHDSyndrome.org
. This includes information about the symptoms, treatment and support options available to people with BHD. *If you would like to talk with me about this, please do feel free to phone [insert number] or email me at [inset email address]*.
With best wishes,
*John Smith*