Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease?

Posted by dc1950 @dc1950, Jan 4, 2022

Does anyone in this group have BHD - Birt Hogg Dube- it’s a genetic lung disease.

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dc1950 | @dc1950 | Nov 27 9:51pm

In reply to @colleenyoung "@20202643brian, allow me to tag a few members like @michde4095 @jeff72 @tullynut @mike500 @dc1950 to join..." + (show)

@colleenyoung @20202643brian That is a lot. Did you have the pleurodesis on either of your lungs? Hope you are doing better now. @dc1950

Colleen Young, Connect Director | @colleenyoung | Dec 10 8:01pm

In reply to @dc1950 "@colleenyoung @20202643brian That is a lot. Did you have the pleurodesis on either of your lungs?..." + (show)

@20202643brian, I'd like to know the answer to the questioni @dc1950 asked too. Did you have pleurodesis, a medical procedure that sticks the lung's lining (pleura) to the chest wall to prevent fluid (pleural effusion) or air (pneumothorax) from building up in the space between them? How are you doing now?

DaveT | @drthomas1cp | 2 days ago

Was diagnosed with Birt-Hogg-Dubé (BHD) this past year and have the trifecta of kidney, lung, and skin issues. Would love to know of any clinical trials in US or any support/resources available through Mayo. The BHD Foundation was recently restructured internationally and may be of interest to others interested in FLCN genetic issue.