My name is Katie and I am now 22 years old.

I was diagnosed with IIH (Idiopathic Intracranial Hypertension [increased CSF pressure in the brain]) in September 2007 aged 13 after a couple of months of agonising headaches, black-outs and loss of vision. Originally I was diagnosed with migraines but after more weeks of agony a routine opticians appointment was what spotted the symptoms. The optician spotted that I had papilledema (swelling of the optic nerve, commonly known to be a symptom of a brain tumour) and was immediately transferred to the Eye Infirmary who then sent me straight to Sunderland Royal Hospital. After hours of testing in A&E I finally had a CT scan which confirmed that I did not have a brain tumour. This was a relief but it left the doctors puzzled as to what was wrong with me. I was admitted to the childrens ward and the following day I had a lumbar puncture (which had to be one of the most painful experiences of my life as I only had local anaesthetic and it took them 3 attempts to get the needle in!) My CSF pressure reading was off the scale, my medical records state is was recorded at +41. It was really much higher than that but the instrument they used to measure the pressure only went up to 40. Finally I was diagnosed with IIH. I have since had my fair share of eye and hospital appointments, a further 3 lumbar punctures and in July 2008 I was fitted with a lumbar peritoneal shunt, an 84 cm tube that drained the CFS fluid from my spine into my abdomen. I had been extremely lucky with my LP shunt and had no revisions but my day to day life was still a constant battle though, I suffer from headaches every day and will always have loss of field vision. In July 2011 I was diagnosed with a Chiari - When your hind brain is sucked into your spinal cavity! Because of this I had to have my LP shunt removed, that was in February 2012.  Within two weeks I was back in hospital, in March 2012 I had ICP monitoring where they drilled a hole in my skull and put in a probe to measure the pressure.  After 16 hours they took me back to theatre, removed it and put in a VP shunt which drains the CSF direct from my right ventricle into my abdomen via a catheter. tunnelled under the skin on my chest. All was fine for a few months when at a routine Opthalmology appointment it was noticed that my optic nerves were swollen again.  I began Diamox SR to help reduce it whilst I waited to see my neuro-surgeon.  In July 2013 I was back in hospital having the valve replaced as it was discovered it had become faulty.  I was recovering fine when I noticed a swelling around the new valve, 4 weeks later I was back in theatre having yet another revision, this time to fit a new catheter to my valve as the peritoneal catheter had detached itself from the valve and migrated down into my abdomen.  It now sits curled up behind my bowel.  I have days when I can't get off the sofa but I never let it beat me. I also have autism which made my life difficult but getting a diagnosis has helped me and everyone else understand me so much better. In 2010 I got back into horseriding (my favourite thing in the world) after having to give it up because of my IIH, and then went onto complete a C&G level two in horse care at Houghall College in Durham.  I have not had another hospital admission since August 2013.  My shunt continues to work well and I'm making the most of this good time. :) 

I love raising money and helping the Charity though so I've decided to continue with my fundraising.

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Thankyou.