Ever get the sinking feeling that the patient can and does know more than the actual medical staff member?
VHL information link
The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL.
http://www.vhl.org
MRI Turned Up
MRI disk turned up but can’t make heads or tails of it so the long wait for the results now starts as its not until Jan when I’ll get them.
Woohoo my first post
Well this is my first post and would like to thank Lami my other half for sorting out the website. As he’s mentioned I’ve had 3 major surgeries of removing brain tumours with the last one being in June this year. Slowly recovering and just had most of my yearly vhl screening this month so waiting to get the results in Jan 2012.
Welcome to VHLhope
Being someone that has a partner with VHL, I’ve setup this site to allow those with VHL, or those dealing with VHL in their lives to come along and post about it.
Whether it be their experiences, hints and tips, hobbies, etc … it’s a place for you all to let the world know, and more importantly your friends (you all know who you are) …
Inferni.