My cousin in WA aged 58 has just been told she has another lesions on her kidney. She had one lesion removed last year. I told her that there was someone else in WA who had BDH and she said that she would love to have a chat to you about it. Let me know if you are interested in doing this and I will forward contact details.

My Dads side of the family all live in WA. We traced it back to my grandfathers mother, we are of Macedonian heritage. My cousins in WA and there are a lot of them, I think so far six have been diagnosed one of my cousins has just had lesions taken off her kidney. She is the one who is seeing Jack Goldblatt.

I have the lumps on my face and on my collar bone area. I have had some laser work on my face (only three lumps) and there is no scarring, but I don’t know if I can go through the pain and the after care. What have you done?

I was advised by the Royal Melbourne Hospital not to have CT scans because of he high radiation and to only have MRI’s and ultrasounds.

On the bright side my grandfather face was covered in HUGE lumps and bumps and he lived to the ripe old age of 93.

Have a great christmas and all the best for the new year.

Jack Goldblatt is the the professor at our Genetic Services here in Perth, located in the King Edward Hospital complex. I took my research to him several years ago and I believe he is now responsible for all testing for BHD in Australia. Sad as it sounds, I am almost pleased to hear of another family in our state with BHD.
I believe our “heritage” of BHD is on our Welsh side of the family. I would love to hear of your progress, keep your chin up, it’s a challenge but not a death sentence if you are vigilant with regular ct/ultrasounds.