Hi,
I am Ruth Page and I am fifteen and have Behcet’s. I have had mouth ulcers since I was a baby, but only got diagnosed not long before my fourteenth birthday after a long fight for the diagnosis. Last year I was put on thalidomide which worked until the summer, when I had to come off it due to nerve damage.
Then I was put on steroids but they only worked on really high doses and so the side-effects were difficult to deal with. The worst side-effect was the weight gain, including the moon face, as due to the frequent flare-ups I had always been fairly skinny until recently. At one point it really got me down but the support from my closest mates (and their determination to make me feel good about myself) got me through it.
A couple of weeks ago (after three months of waiting) I finally started Etanercept, which worked after just two days and even helped my tiredness. Since then the steroids look has gone down, and my attitude is much more positive.
I have now been to two AGMs, the first of which was the first time I had ever met anyone else with the illness. I really enjoyed both, having now made contact with loads of different people linked to the Society, including a couple of kids my age. Both times were really fun, and my mum enjoyed them too.
In the next few months I’m really looking forward to getting back to something resembling normal life, especially spending time with my friends (and family). I’m especially looking forward to only my second Christmas where I can actually eat my roast dinner normally. I also am looking forward to helping Matt set up the youth website. I am hoping to be able to make a difference to the other kids my age with Behcet’s, as I know how it feels to juggle school and homework around hospital appointments and being generally too tired
Hope you all have a good Christmas and New Year.
Thanks for reading,
Ruth Page
