I was diagnosed with VHL, aged 25 – I’m 42 now. Through the years I’ve had numerous eye surgery’s umpteen kidney surgery’s, partial nephrectomy & 3 brain surgery’s. I’ve lost sight in my right eye & at the moment have 10 brain tumours, I’ve had 3 brain surgerys to date, possible 4th next year! It’s hard living with VHL, never knowing what is going to happen next! Never ending scans & screenings. What I find very hard is the guilt of passing this gene to my children & granddaughter. I’ve kept my story short & to the point or I’ll be here all day. #vhlawareness
Love to all
Linzie x
