If you have been diagnosed with BHD, there are a few simple suggestions for your overall health. These are general ideas that could apply to everyone, namely:

• eat sensibly
• get plenty of exercise and sleep
• don’t smoke
• check your blood pressure

For those who have or are at risk for BHD, there are a few more things to consider.

Skin

There is no research that shows that there is anything you can do to avoid getting the skin lesions associated with the Birt-Hogg-Dubé syndrome. There is no skin regimen and no diet that would prevent more of these lesions from growing. If you get some of the lesions removed, there is nothing we know of that will prevent them from growing again. See the Skin Treatment page for more details.

Lungs

Because you may be prone to spontaneous pneumothoraxes, you should:

• avoid smoking
• avoid high altitudes
• avoid scuba diving
• avoid flying in unpressurized planes
• carry information with you that explains your condition.

Some doctors may advise against flying if you have the Birt-Hogg-Dubé syndrome. We know of many BHD families who do fly frequently. We know of individuals with lung cysts and blebs who fly in commercial airplanes. A decision about how to deal with the possibility of a spontaneous pneumothorax must be made on an individual basis and we strongly recommend that you discuss this with an expert pulmonologist before deciding what is right for you. This is not a decision that should be made without professional medical assistance.

Even if you have never had a spontaneous pneumothorax, we suggest you be checked by a pulmonologist and familiarize yourself with the symptoms of a lung collapse so you would know what is going on should you experience this.

Kidneys

Many books have been written about maintaining kidney health for those who have kidney disease. However, having kidney disease is not the same as having kidney tumors or kidney cancer. If you are looking for books or for information online about how to live with kidney issues, make sure you are not reading about kidney disease. Even if you have the benign oncocytomas, your situation is not the same as someone with kidney disease. Kidney dialysis patients may have very different needs than those with BHD.

Many people who have kidney cancer ( renal cell carcinoma, or RCC) are told that they can live as usual after having part of a kidney or a whole kidney removed. They may be informed that they can eat normally because you can get along fine with just one kidney. This is not necessarily the same situation as that faced by those who have the Birt-Hogg-Dubé syndrome.

BHD manifestations are often multiple tumors in the kidney, if these are removed, new ones can grow. It’s important to maintain the healthy kidney tissue as well as possible for as long as possible. However, there are no official guidelines specific to BHD on how this can be done.

You may want to talk to a dietician or a nutritionist to see if they can research options for you and suggest an appropriate diet. Your local dieticians and nutritionist may not have dealt with this previously. Some people see a nephrologist

Some studies have suggested that certain foods may be associated with or prevent kidney cancer. For example, eating fresh vegetables may help prevent kidney cancer. Eating red meat may be associated with kidney cancer, as may eating a lot of animal protein. Eating fatty fish may help prevent kidney cancer.

The kidney tumors related to the Birt-Hogg-Dubé syndrome are caused by an alteration in the FLCN gene, and there is no research about diet and these tumors, or if diet can have any affect on when or if these tumors may appear. It is not known how the mutation of this gene results in kidney tumors in some cases. (Not everyone who has BHD will develop kidney tumors.) In addition, these studies do not discuss what foods are best after you have kidney cancer.

Sources

• Clinical Cancer Research 13, 671s-679s, January 15, 2007. doi: 10.1158/1078-0432.CCR-06-1870
  Identification of the Genes for Kidney Cancer: Opportunity for Disease-Specific Targeted Therapeutics
  W. Marston Linehan, Peter A. Pinto, Ramaprasad Srinivasan, Maria Merino, Peter Choyke, Lynda Choyke, Jonathan Coleman, Jorge Toro, Gladys Glenn, Cathy Vocke, Bert Zbar, Laura S. Schmidt, Donald Bottaro and Len Neckers.
• Spontaneous Pneumothorax information
• Risk of Spontaneous Pneumothorax
• Lung Cysts, Spontaneous Pneumothorax, and Genetic Associations in 89 Families with Birt-Hogg-Dubé Syndrome
• Vegetarian Diets May Not Be Better
• Fatty fish protects against cancer
• Kidney Int. 2008 Apr 2
  The risk of acute renal failure in patients with chronic kidney disease.
  Hsu CY, Ordoñez JD, Chertow GM, Fan D, McCulloch CE, Go AS. Department of Medicine, University of California, San Francisco, California, USA.
• American Journal of Epidemiology 2007 166(1):62-70; doi:10.1093/aje/kwm043
  Dietary Risk Factors for Kidney Cancer in Eastern and Central Europe
  Charles C. Hsu, Wong-Ho Chow, Paolo Boffetta, Lee Moore, David Zaridze, Anush Moukeria, Vladimir Janout, Helena Kollarova, Vladimir Bencko, Marie Navratilova, Neonilia Szeszenia-Dabrowska, Dana Mates and Paul Brennan