Growing up with a childhood liver disease can affect your mental health as much as your physical health, as Curtis, now 26 explains.
I was diagnosed with biliary atresia when I was a few weeks old and underwent a Kasai. This meant that my liver functioned reasonably well for several years although when I think of my childhood, I do remember being in and out of hospital a lot and I think my education suffered as a result.
By the time I was 15, my liver was failing and I was put on the transplant list. I was losing weight, my skin was yellow and I felt really ill. I couldn’t go to school or go out with my friends – I was just bed bound. Doctors told my parents that without a transplant I would only last another two weeks. It was a dreadful time.
It was while I was on the liver ward that I first came into contact with CLDF. The charity was amazing to myself and my family; they explained in details what was going on; they helped us get through the process mentally and helped my family through the hardest time when I had to go into the operation.
I know how lucky I am that a donor liver was found in time and my liver transplant changed my life. I was able to go back to school, I could play football again, just do normal stuff and was no longer teased for being yellow. I’m so grateful to that family who made that decision to donate their loved one’s liver and it makes me feel really lucky.
Supporting CLDF has been important to me since then. I know what it’s like to be young and constantly in hospital, with a disease that no-one has heard of so I wanted to do something for the kids who are going through what I went through. Rockabilly music is my life so it made sense to turn my passion for music into a fundraiser for a cause which means a lot to me.
I’ve since hosted a number of all-day rockabilly music events combining live bands and DJ sets. I’m delighted to have raised over £2,000 for CLDF and I plan to do more of these in the future.
Nowadays my liver health is pretty good although the fact that I was given two weeks to live when I was 15 is still something which affects me mentally and it causes me anxiety each time I have to go to hospital as I worry I will hear bad news.
The way I care for my mental health is to keep active, see my friends, and do things that keep my mind occupied, especially music which is my passion. To any young person who feels that their liver condition may have caused them anxiety, I would say do not be afraid of asking for help from family, friends or even doctors. And try and keep your mind distracted from the negative thoughts that may be going through your head.
If you have any passion or dreams growing up, as I did with my music, then go for it and strive towards your goals. You got a second chance in life with your new liver so try and stay as healthy and positive as possible.