Living with Birt-Hogg-Dubé syndrome. How to live with Birt-Hogg-Dubé syndrome?

Can you be happy living with Birt-Hogg-Dubé syndrome? What do you have to do to be happy with Birt-Hogg-Dubé syndrome? Living with Birt-Hogg-Dubé syndrome can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Birt-Hogg-Dubé syndrome

3 answers

For me o needed to stop worrying about lung collapses and the chance of kidney cancer. My doctor says I have a normal life expectancy.

Posted Mar 4, 2017 by Keith 1002

Yes, you can live very well with it but need to learn the symptoms of collapsed lungs and get regular monitoring for kidney cancer.

Posted Mar 4, 2017 by BillD 1053

Nierkanker op beide nieren, geslaagde operatie, nu 2 jaar later nog oké elke 6 mnd controle op nieuwe tumoren, elke keer dat ik lange tijd pijn heb op dezelfde plaats is toch een leven geworden in onzekerheid met de angst en nog extra mri s erbij. Zolang het goed met mijn lichaam is voelt het goed. Niet ver vooruit kijken en 'doe het vandaag i p v morgen'. De nonchalante houding van verschillende specialisten valt niet te vatten.

Posted Apr 4, 2019 by Christa 100

Living with Birt-Hogg-Dubé syndrome

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Stories of Birt-Hogg-Dubé syndrome

BIRT-HOGG-DUBÉ SYNDROME STORIES

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MY STORY SO FAR

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...

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1/30/16, 1:38 AM by Kerrie chrimes

I AM FAMILY

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.

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2/8/16, 3:21 PM by Randi

WHY ARE MY LUNGS COLLAPSING?

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...

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2/6/16, 7:35 PM by Fellow BHDer

FAMILY

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...

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2/24/16, 10:24 PM by LaShea

MY DAUGHTER I GAVE UP FOR ADOPTION TOLD ME I MIGHT HAVE BHD

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 ...

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3/15/17, 3:43 PM by Kathy

Living with Birt-Hogg-Dubé syndrome. How to live with Birt-Hogg-Dubé syndrome?

Living with Birt-Hogg-Dubé syndrome

What is the life expectancy of someone with Birt-Hogg-Dubé syndrome?

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Celebrities with Birt-Hogg-Dubé syndrome

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Is Birt-Hogg-Dubé syndrome hereditary?

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Is Birt-Hogg-Dubé syndrome contagious?

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ICD10 code of Birt-Hogg-Dubé syndrome and ICD9 code

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Is there any natural treatment for Birt-Hogg-Dubé syndrome?

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Birt-Hogg-Dubé syndrome diet. Is there a diet which improves the quality of...

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What is the history of Birt-Hogg-Dubé syndrome?

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