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

Lung Health | Last Active: Jul 5 12:00pm | Replies (26)
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@colleenyoung

Hi @mike500, I moved your question about Birt-Hogg-Dubé syndrome to this existing discussion.

- Does anyone have Birt-Hogg-Dubé syndrome (BHD), genetic lung disease? https://connect.mayoclinic.org/discussion/bhd/

I did this so you can read previous posts and connect easily with @dc1950 @cathleenc and others who can share more about their experiences.

Mike, I look forward to learning more about you. What symptoms led to your being tested for BHD? What questions do you have?

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Replies to "Hi @mike500, I moved your question about Birt-Hogg-Dubé syndrome to this existing discussion. - Does anyone..."
dc1950 | @dc1950 | May 14 12:03pm

Hi Mike. I have BHD as well as my daughter and grandson. We assume my mother as well since she had same symptoms. I wasn’t diagnosed until almost 10 years ago. It was hard finding a doctor who had knowledge. I’m happy to answer any questions you have. Take care, Donna

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mike500 | @mike500 | May 15 2:29am

Thank you very much for your immediate response. I am 49 years old an i live in Athens ,Greece. I am looking for a doctor who is experienced in BHD .I only have symptoms in my lungs. I have multiple cysts and i have had multipleepisodes of pneumothorax in both lungs.
I was operated in my right lung 20 years ago and had a pleurodesis ,but now i have an issue with my left lung and there is a debate whether i should have a pleurodesis or not.
Furthermore, and that is the critical question, i would like to know what is the prognosis of the disease ,and what is the possibility of lung transplant.

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