You can help your medical team to stay informed about your health

Keep copies of all your medical records

MRI machine

Ask your doctor what contrast medium is best for you

Guidelines for follow-up

These guidelines are currently based on the literature that is available to us. Different doctors have different ideas about follow up. These ideas also vary widely from country to country. We will post updates as soon as they become available to us. It is very important that you work with your medical team to individualize your follow up plan within the framework of your personal medical and insurance situation.

Overall

Maintain a healthy lifestyle; eat sensibly and exercise.
Don’t smoke.

Skin

There is currently no prescribed follow-up for the skin symptoms associated with the Birt-Hogg-Dubé because there is no treatment that works permanently to eradicate these symptoms.

If you are bothered by your skin lesions, or if they itch or catch on clothing or jewelry, consult a dermatologist. You may want to discuss different options for treatment that will have temporary effects.

Lungs

Be aware of the symptoms of a spontaneous pneumothorax and be prepared to seek medical help or go to an Emergency room should you experience these symptoms. You may not need any treatment, but it is better to be examined by a medical professional than to make this decision on your own.

Depending on the presence or absence of lung cysts at your diagnosis, your past history of pneumothoraces, and your family history of pneumothoraces, you can set up an individual follow-up plan with your pulmonologist.

In a study done at the Mayo Clinic in Rochester, New York, X-rays did not show the cystic lung condition associated with BHD in all affected patients, but CT scans of the chest did.

It is a good idea to avoid:

• high altitudes
• scuba diving
• flying in unpressurized airplanes

Kidneys

If you have been diagnosed with the Birt-Hogg-Dubé syndrome, it is extremely important that you have your kidneys checked regularly. This because there is a possibility that you can develop renal (kidney) malignancies. When detected early enough, these should in most cases be manageable.

You may have regular:

• Blood tests and
• Urinalysis
• CT scans of the abdomen or
• MRIs of the abdomen area

See the Kidney Treatment page for specifics of kidney tumor treatment.

Psychological

Having a rare hereditary syndrome can affect your life on many levels. It’s important to learn to adjust while taking your personal and medical needs into consideration. Consulting a psychologist, psychiatrist, geneticist or genetic counselor with your questions and concerns can be really helpful.

Your medical team

If your insurance allows you a choice of doctors , pick medical professionals who are willing to work together, to keep track of your symptoms, and to consult with the latest developments in Birt-Hogg-Dubé research.

Medical Records

It is very important that you keep track of all your medical records. You may already have a system in place; if not, it is a good idea to find a place to organize and file all your procedure and test results. You are entitled to these.

If you have CT scans or x-rays, you are normally also entitled to one free copy of these. You can ask your own personal care physician (PCP) if he/she has copies and can give you a copy as well. You can also go directly to the provider for the service to ask for a copy.

If you have the Birt-Hogg-Dubé syndrome, several different parts of your body are affected and you may end up seeing different doctors. It could be very helpful to these doctors if you have a clear record of you medical history.

You should also keep your bill and payment records. If possible, pay by check because this gives you a traceable record. Keep copies of all your health insurance claims and filings, and any letters related to insurance and any reimbursements. If you have prescriptions, maintain an updated record of what medications you take.

Family Medical History

You may want to start a written record of your extended family’s medical history. If your family has the Birt-Hogg-Dubé Syndrome, this could be very valuable to both present and future generations. It’s important to include both primary (immediate family) and secondary relatives ( aunts, uncles, cousins, etc.)

This can be an informal project; you can begin by just talking to as many relatives as you can. It can also be as detailed as you wish to make it.

There are several different online tools for Family Medical Histories , some of which are listed here for your convenience. The Birt-Hogg-Dubé Family Alliance does not recommend any one tool over another:

• National Human Genome Research Institute Family History
• US Surgeon General’s Family History
• National Society of Genetic Counselor’s Family History
• Genetic Alliance Family History (see Chapter 3).
• American Medical Association Family History

Sources:

• Cystic Lung Disease in Birt-Hogg-Dubé Syndrome*
  Dereje S. Ayo, MD; Gregory L. Aughenbaugh, MD; Eunhee S. Yi, MD; Jennifer L. Hand, MD and Jay H. Ryu, MD, FCCP
  Chest, doi:10.1378/chest.07-0042
  doi:10.1378/chest.07-0042
  (Chest. 2007; 132:679-684)
• Laparoscopic Partial Nephrectomy: Ready for Prime Time☆
  Monish Aron, Georges-Pascal Haber, Inderbir S. Gill
  Volume 5, Issue 19, Pages 968-974 (November 2006)
• NCI’s Kidney Cancer treatment page
• NCI’s Kidney Cancer Follow-up Care information

See our disclaimer page for more information about this site. We are not medical professionals and strongly urge you to consult your medical team before making any decision related to any aspect of your health.