Olivia’s story

Hi, my name’s Olivia and this page is AALLLL about me!!!

I’m nearly 11 so I still have to go to school! My favourite subject is English but I hate Maths. When I leave school I’d like to work in the music business as a Manager, just like Scott “Scooter” Braun who discovered Justin Bieber! My idols are Justin Bieber, Scooter and Usher. When I’m not listening to music, I love skiing, shopping and skyping my friends – the 3 S’s!!!

I was diagnosed with chronic uveitis in both eyes in 2009 when I was 9 years old. I hadn’t been feeling strange, and my eyes weren’t hurting at all. I suppose that’s why we hadn’t found out about it sooner.

Mum took me to the optician for an eye test for the first time. I couldn’t see the big E on the chart with my right eye. He said something was wrong and that I needed glasses. I’d known for years that I couldn’t see properly but I guess I’d just got used to it.

(I’ve broken so many pairs of glasses since then I’ve lost track! But don’t tell anyone it’s a secret!)

I’ve been to see soooo many doctors, some I’ve liked and some I’ve hated. Then I started seeing Professor William Ayliffe (Will for short!) The place I see Will is really nice. Will started me off on weekly Methotrexate and 10 tablets of Ciclosporin a day, which was horrible as they stunk! But I became a professional pill taker in no time – soaking them in grape juice helped a bit!

My treatment at the moment is dilating drops at night time which I don’t like because my vision is still all blurry the next day at school; steroid drops sometimes depending on how good or bad my eyes are. I also take Tacrolimus, 6 tablets a day and Methotrexate injections twice a week on the weekends (I really hate injections.)

I have never liked having Uveitis. It can be frustrating because I never know if my eyes are flaring (and they do -ALOT!) until my sight starts worsening. It’s also annoying when my Mum sits and talks to Will like forever at my monthly appointments!

I really hope that with all of your help, one day we can find a cure.

Olivia x

Hi, I’m now nearly 15 and my music tastes have changed quite a lot ☺, but I STILL HAVE UVEITIS!

Treatments have changed constantly due to my type of uveitis being so stubborn, but thanks to Will Ayliffe, I’ve regained some sight in my right eye, and I’m no longer legally blind. It’s still really annoying, and I still hate Humira, but after so long I’m just used to it.

At times I worry about what if every drug stops working. What if I lose more sight. The thick cataract in my right eye, from a mixture of the uveitis and then all the steroid drops that the first two Doctors gave me, will be removed sometime after I’m 16 and have done my GCSEs, and when my eyes have been quiet for a few months. This is also scary!!!

Mostly I don’t even think about having uveitis. Its only when I have a really bad appointment cos the cells have increased by loads, that I can get upset, but otherwise I just get on with it! Nothing stops me going out with my friends and having a good time, nobody would ever guess there was anything wrong.

Will is still amazing. He’s always made sure that I’m involved in decisions about my treatments. He always explains what’s happening, and answers every single one of my questions. I never leave his room feeling that I don’t know what’s going on. He’s really patient and talks to my parents for ages!

I’ll keep updating if anything changes, but until then…

Liv x