BHD in Ireland

Hello all,

Are we the first in Ireland? I am 38, four children, living in Dublin, Ireland – in great health except for this kidney tumour I have for the next few weeks… Found by luck after a routine checkup. My new years resolution is to tell all friends to have a checkup and check out anything slightly off…

I have a family member who has just been diagnosed as having BHD. He has a history including collapsed lung, and has just found a 2cm tumour in his kidney. My mother, who has not been tested, has spotted a “nodule” on her lung, and has had some papules on her skin.

All of this is suggestive of the fact that BHD may be the cause of my 4cm tumour in my right renal lobe [Bosniak IV]. My CT shows no action elsewhere, including lungs, although I do have a small number of skin lesions as well.

I am travelling to the USA to have a partial nephrectomy on February 9th 2010 in Baltimore (Johns Hopkins), and have just seen that there seems to be a centre of knowledge in Bethseda which is nearby – if someone will post details I will give them a shout.

Anyway – best regards to all living with BHD.

G