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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

Thank you for the education, Donna. With such a rare condition, I'm sure you're used to having to educate others about BHD. When the next member seeks support for newly diagnosed BHD, I'm glad you'll be here to guide them.

I'm sorry to hear that the pseudomonas are your most challenging issue right now. While perhaps not related to BHD, there are several members here who have dealt with or are dealing with pseudomonas. Here are a few discussions that I think you may have something to give and get. 🙂

- Does anyone have a recommendation for a Mayo Doctor for Psuedomonas? https://connect.mayoclinic.org/discussion/mayo-doctor-for-psuedomonas/
- Should my pseudomonas be treated? https://connect.mayoclinic.org/discussion/should-my-pseudomonas-be-treated/

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Replies to "Thank you for the education, Donna. With such a rare condition, I'm sure you're used to..."
dc1950 | @dc1950 | Jan 13, 2022

Thank you Colleen. I believe you are correct in saying BHD is perhaps not related to psuedomonas, but I think effects of BHD caused weakness and other issues to make the lungs perfect hosts for pneumonia/bacterial infections. Thanks for the suggestions. I will check out those discussions. Its nice to have this venue to learn. Thanks for doing that. Stay healthy!

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