Hi my name Is kirsty I was diagnosed with VHL when I was 12. 
We as a family first discovered that VHL was in the family when my mum got rushed in to hospital after clapsing. She had a headache at the back of her head for 18 months and the GP keep telling her she was under stress and to keep taking Paracetamol. Eventually, they found a Brian tumor. They tested and discovered that it was VHL. The whole family then got tested and we discovered myself, mum and grandma had tested positive for the disease.
I had my first operation at just 21 years old, where I had a hemangioblastoma on the left cerebellar. I have had numerous laser treatments to both eyes. Currently, I have one in the left eye to the back where they are finding it difficult to remove. I have had around of injections and laser with in a theater setting. At the moment I am on the second round of injections and a further laser treatment! I also have a spinal tumor at C2 and C5 which is being closely monitored. This does cause some numbness to both hands and arms. I also have a pancreatic cysts at the head of the pancreas and a couple of kidney cysts. All of which are being closely monitored.
I can’t thank my genetics at the Leicester Royal And Birmingham Queens for all of the great care I have received 💙
