Q1: What can I do about the skin bumps on my face? How do I get rid of them?

A: This is the question we hear most often, and we wish we had the answer everyone wants to hear, but there is no cream or lotion we know of that makes the skin lesions go away, and no treatment that can make the skin lesions associated with BHD disappear permanently. It’s possible to use one or more treatments that will reduce the appearance of the skin bumps, or even make them go away – but this is temporary. This result could last up to a year or two – then you would have to decide if you wanted to repeat a treatment over and over. You should see an expert dermatologist. Be aware that treatment can in some cases leave scars.

Q2: My dermatologist says I have BHD . What should I do?

A: We’re fortunate to have so many dermatologists who are connecting the biopsies of skin lesions as Fibrofolliculomas to BHD. However, you won’t know for sure if you have BHD until you have a gene test. The results from the dermatologist are not enough to give you a definitive diagnosis. We suggest you look at your insurance options and then arrange for the test.

Q3: I have BHD and one or more of my family members doesn’t want to hear about it or get tested. What should I do?

A: This is not unusual. It’s important to balance the need you may feel to give a family member information that can be really important to their health. with the need to respect an individual’s right to make their own decisions. One way to do this might be to put together some information for each family member that may be affected – You could use our letter about BHD and include a copy of your test results. If a family member needs to be tested, it is easier to have it done at the same lab you used. It is also less expensive to have a family member tested if you already know the mutation. After you have made this information available to your family, you can see if it opens up a discussion.

Q4: If I have a collapsed lung do I have BHD?

A: Not necessarily – it’s possible to have a lung collapse, or spontaneous pneumothorax, that is not related to the Birt-Hogg-Dubé Syndrome. Tall, thin males , especially athletic ones, may be prone to getting collapsed lungs. Some families may have a tendency to get collapsed lungs. It’s important to see a doctor, and to ask if this could be hereditary. You could bring some information about collapsed lungs and BHD along with you. In the research section of this site, you will find articles about BHD (requires registration).

Q5: Is there a cure for BHD?

A: There is currently no known cure for BHD, just as there is no way to predict which BHD manifestation you may develop, and which you may not. Researchers are working on finding a treatment to stop the growth of BHD kidney tumors, but this is not yet available.