I have asked my Mum and Dad to help me write this letter to you because some of you are asking me questions about the condition I have. I think it might be easier to answer your questions all in one go.
When I was 1 year old I got very sick and stopped growing. The doctors found out that I have Cystinosis which is very rare. The good news is as long as I take all my medicines I can be just like everyone else!
What this means:
- I need to drink a lot of water every day (3-4 litres!).
- I need to go to the loo more often than you.
- I need lots of medicine during the day and night (17 xs per day).
- I have a small tube in my tummy. I can’t eat enough to stay healthy, so at night when I’m sleeping I get special milk through my tube. This doesn’t hurt at all. I can also have some of my medicines through my tube, which is great because they taste HORRID!!
- I feel tired most of the time. I often feel sick.
- The medicines are very strong and sometimes you can smell them on my breath.
- I need to wear sunglasses a lot of the time because bright lights and sun hurt my eyes.
- My teeth are a little bit yellower than yours because of all the medicines I take.
- Mum has a blue badge in our car so I don’t have to walk too far when I’m feeling very sick or tired.