From a young age I have had headaches, tiredness and stomach pains. I was diagnosed with growing pains and stress by a local paediatrician. Headaches were diagnosed as sinusitis and they suggested an eye test. Only when symptoms and pain became severe and behavioural changes took place, I was admitted to hospital, had numerous scans and tests which confirmed I have PSC (Primary Sclerosing Cholangitis) and UC (Ulcerative Colitis). Once diagnosed at Birmingham I got a lot of support from the clinical nurse and youth worker.
It had a great impact on my education as I lost a year of my college course due to admissions into hospital and have had to take a third year to complete my course. It was very difficult for people to understand my condition and know that it is chronic and won’t get better. It had a great affect on my family as I was so ill my mum had to stay in hospital with me for nearly 2 months with the support of my dad and my brother, who found it hard to cope with as he finds it hard to show his emotion and bottled it up. It also had a great impact on my own life because I was a gymnast for 8 years and couldn’t go back because of my illness, and I am restricted on what I can do because of my fatigue and other symptoms that I live with on a daily basis. My friends and college teachers were concerned when I was turning up to college and falling asleep and complaining of headaches. When I was having lots of time off college and when I was in hospital my friends carried on with college and got the course complete so I lost friendships and got put behind a year because I had missed so much of my course. It took a long time for college to properly understand the extent of my illness and know that I was extremely poorly. When my mum was staying with me it had a great impact on her job because they made it hard for her to support me.
It was devastating to be diagnosed with the two chronic conditions, however, I am determined to complete my college course and further my education in order to achieve a future career and will not let these illnesses rule my life. But a positive thing from having this illness is that I have become a stronger person and met my boyfriend (who also has PSC), and we support each other through the good times and the bad.
I am part of the PSC Support group and also the Children’s Liver Disease Foundation. I have gained a lot of support from both groups as they were/are there for me and my family when we need them.
I feel frustrated that liver disease is stereotyped as alcohol and drugs related when that isn’t always the case and people like myself are diagnosed with a liver condition through no fault of our own as it is an autoimmune disease.
Check out my story here: https://m.youtube.com/watch?v=RE_Pwjp2btQ