I am a 44 year old woman living in the UK. I have always had skin lesions on my face neck and upper body. I have visited doctors in the past, including a dermatologist and have never had an explanation as to why they had occurred. Recently I asked my local beautician to try and remove one of these lesions with electrolosis ? (some sort of cautersing thing I think)! With this in mind I searched the internet to see if I could purchase one of the gadgets she used as I did not fancy paying £45 each as I have a huge amount of lesions! Whilst undertaking a small amount of research on Google I noticed a photograph that was posted that looked exactly like my nose!
To cut a long story short, I found your website and went off to see my GP with the information and photographs. Although she had not heard of BHD she was genuinely interested and referred me to a dermatologist at Warwickshire Nuffield called Bruce Gee who was brilliant, it was such a relief to speak to someone that knew about BHD. Dr Gee took biopsies and subsequently confirmed that the lesions are fibrofolliculomas.
I am now awaiting genetic testing at Birmingham Womens Hospital. I have four brothers all of whom have children (I do not have children). One of my brothers has similar lesions on his face. There has be no diagnosed history of BHD in our family but there have been cancers in one side of the family.
I will update when I complete my genetic testing.
Ruth
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Update…
On 11th March 2010 I was seen by Dr Derek Lim, a specialist in genetics from the Birmingham Clinical Genetics Unit and he took blood samples for my genetic testing. This morning he telephoned me to confirm that I do have BHD. To be honest I was expecting this to be the case, I am just glad that I found out so that I can have regular screening. I will now have my first scans to check that all is OK.
This website is very helpful, particularly with the advice on telling your family about BHD, it was also the website that I initially looked at when I was trying to find out what the lesions on my face were and saw the photographs on here, so thank you for that.