Hi, my name is Anna, I’m 31, and living in Gloucestershire, England.
Fibrofolliculomas have always been a part of my life, my Dad has always had them, and had them diagnosed as such before I was born. He also suffered 2 collapsed lungs, at the ages of 30 and 45, left side both times. When I started to develop the lumps in my early teens, we knew what it was, and thought little of it, only seeing a dermatologist to see if I could have some removed-sadly not as they are too small.
BHD was never mentioned until Dad had tests 6 months ago for something entirely different. The Dr just mentioned BHD in passing, and ever since we have been waiting for appointments and results. We are currently waiting for the results of my Dads genetics tests, if he tests positive, mine will be sent in too, though if he is positive, so am I.
Its been a battle with our GP to get the scans we need, I saw the consultant 4 months ago, and only last week did the GP agree to send for the kidney and lung scans. He also doesn’t want to send us for them annually as recommended. I realsise the reluctance before there is a firm diagnosis, but our consultant has said he will diagnose BHD for us both anyway, even without a positive genetic test, as our combined history fits it too perfectly for it not to be.
Is anyone else living in the UK with BHD? Have you hade similar problems with the NHS doctors?
I am also very worried about my future. I currently don’t have any children, and reading on the main site here, and the forums, I have seen mention of genetic councelling, and recommendations not to procreate, but it only seems to apply to the US, my consultant has even said that my future children won’t be tested til they are adults, so he seems happy for me to risk passing it on…… Has anyone here gone on to have children after a BHD diagnosis?