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Birt-Hogg-Dubé syndrome stories
I was recently diagnosed through genetic testing. It was brought to my attention when i was sent to a specialist (last year) because of the bumps on my face. Tests revealed they were foliculomas, then genetic testing confirmed the BHD diagnosis. I re...
Views: 908 Jan 30, 2016, 1:38 AM by Kerrie chrimes
I had a flawless complexion as a teenager with exception of one large flesh colored mole on my nose. At age 30 I was diagnoised with Rosacea (adult acne). DID NOT MAKE SENSE TO ME. At 36 years old had 1st Lung collapse. Diagnoised with Lung cysts and...
Views: 802 Feb 6, 2016, 7:35 PM by Fellow BHDer
My husband is the one with the disease, many years ago he had many pnemothorax and first now with a new disease dilated aorta, they did a gene test and found this new disease. So now he is been checked with MR and so on.
Views: 776 Feb 8, 2016, 3:21 PM by Randi
I just found out that I have Bhds. As a family we found out that my brother had it and another rare genetic mutation when he found out that he had stage 4 kidney cancer. It took a while but I was finally able to be tested for both. I came back positi...
Views: 728 Feb 24, 2016, 10:24 PM by LaShea
I am 60 and was diagnosied with Cystic Fibrosis I did not do the whole panel for CF and I have been at a CF Clinic for 10 years now ,I gave my daughter up for adoption when she was a small child I was so sick and could not care for me or her .I have ...
Views: 485 Mar 15, 2017, 3:43 PM by Kathy
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