Charlotte has some words of reassurance for young people who are diagnosed with a liver disease.
I was 18 years old when I was diagnosed with the rare liver disease, autoimmune hepatitis, and suddenly my carefree life wasn’t the same. Taking up to 15 tablets a day and being told I would need medication for the rest of my life was difficult to accept.
No teenager wants to be on medication that has side effects that cause things such as weight gain, mood swings and acne, as well as of course not being allowed alcohol (any student’s worst nightmare.) Juggling my condition symptoms, medication side effects and appointments while trying to maintain a “normal” life with my education, work and friends can prove challenging and at times overwhelming.
Immediately after diagnosis, I began researching information about my condition, going down rabbit holes of the worst-case scenario and desperately trying to find someone in the same situation to relate to and tell me it would be OK.
The problem with a rare disease is that it’s not that easy to do this but this is where Children’s Liver Disease Foundation came in. The charity provided a space to connect and chat with people in similar situations. They also have a great help and support team who provide advice on how to manage my condition.
Over a year since my diagnosis, I can honestly say I am OK. I’ve just finished my second year at college, and I’ll be going to university in September to do social work. If you have recently been diagnosed with a liver condition, you will be OK. Contact CLDF, you’ll have the comfort of knowing that there are people to talk to and you can help and support each other.
I’m hoping my story will help others in the same way that other people have helped me.
More information on our support for young people here
