Stories of Birt-Hogg-Dubé syndrome

STORY
Birt-Hogg-Dubé syndrome stories
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...
Birt-Hogg-Dubé syndrome stories
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.
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...
Birt-Hogg-Dubé syndrome stories
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...
Birt-Hogg-Dubé syndrome stories
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 ...

Tell your story and help others

Tell my story

View more

Birt-Hogg-Dubé syndrome forum

QUESTION

Ask a question and get answers from other users.

Ask a question

View more

Statistics of Birt-Hogg-Dubé syndrome

2 people with Birt-Hogg-Dubé syndrome have taken the SF36 survey. Mean of Birt-Hogg-Dubé syndrome is 2863 points (80 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

View more

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map

Birt-Hogg-Dubé syndrome

Join the map