If you have BHD syndrome, we suggest the following:
- Consult a pulmonologist to arrange a high resolution CT scan so you can find out if you have lung cysts, even if you do not have any lung symptoms yet.
- Be sure to have an emergency plan in mind for getting to a hospital or doctor as soon as possible if you ever get a collapsed lung.
- Take a clinical description of BHD with you, and a medical history describing any lung treatment you have had to give to the doctor when you get there. We have designed a Clinical Introduction, Medical Education Kit and Medicard to make this easier for you.
- Carefully consider the risks of travelling to remote locations where getting access to medical treatment may be difficult.
There are situations or lifestyle choices that can increase the risk of a pneumothorax. How you respond to these activities will depend on how severely your lungs are affected by BHD and your personal attitude towards risk taking. However, you might want to think about how to avoid these situations or how to minimize any risks:
- Contact sports, like rugby and American football.
Experts have found that a small number of BHD patients (1 in 16) develop a pneumothorax up to a month after taking a commercial flight (1). Their advice is not to avoid flying, and to live as normally as possible, but to be alert to any symptoms of a collapsed lung after flying.
If you do develop any symptoms, however minor, you should get a chest X-Ray to check if you have a pneumothorax. This is especially important if you are due to take a return flight, as having a small pneumothorax (caused by the outward journey) is likely to be made worse by the return journey. They also suggest that you take a copy of this study with you to show your doctor.
If you would like to discuss any of these issues with other BHD patients, why not visit the BHD Syndrome Facebook Group?
1. Postmus PE, Johannesma PC, Menko FH, Paul MA. In-flight pneumothorax: Diagnosis may be missed because of symptom delay [Internet]. Vol. 190, American Journal of Respiratory and Critical Care Medicine. American Thoracic Society; 2014 [cited 2021 May 19]. p. 704–5. Available from: https://pubmed.ncbi.nlm.nih.gov/25221882/
Last Updated: May 2021
Review date: May 2024