My story so far

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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 realised that my father had the same bumps on his face so I told him and he had genetic testing and he too has BHD, he is 82yrs old. He has had the oncocytomas of the kidney and parathyroid, cancer in the bladder and bowel and many, many skin cancers majority being squamous cell cancers. His siblings and mother all died of bowel cancer. His mother also had BHD as did his siblings (he suspects). I know there has been no definative link between bowel cancer and BHD but it would not surprise me in the future if a link is found. If anyone knows of an effective way to decrease the effects of the foliculomas on the face I would greatly appreciate your feedback. I have had some screening of my kidneys and lungs and no cysts were found ...so far. My 3 children all in their twenties now have to decide if they want genetic testing. It is reasuring to know that I'm not alone with this. Best wishes to all the BHD'ers out there in the world.