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Patient Voices: Talk, tell, transform


Talk, tell, transform

The stories in the Talk, Tell, Transform series were created at Patient Voices Reflective Digital Storytelling workshops in Cambridge, England in October 2012 and February 2013. The Childrens Liver Disease Foundation (CLDF) Talk, Tell, Transform project enabled young people to tell their story and share it with others. In doing so, the project aims to reach out to other young people and support them in their liver disease journey. The project was funded through the generosity of CLDF supporters.

The sky is the limit
Diagnosed with liver disease as a baby, Reece was not expected to reach the age of ten without a transplant. A keen footballer, his illness forced him to take a break and left him feeling miserable and heartbroken. Today, Reece’s check-ups are less frequent and he is back playing football and he has vowed never to let liver disease get in his way.

Lewis was diagnosed with autoimmune liver disease at the age of seven. Later tests revealed that both he and his father had hereditary Von Willebrand’s disease, but Lewis felt relieved that at least each knew what the other was going through. Today, Lewis is in remission and living a life that is normal – for now.

Look beyond the scar
Abi was born with biliary atresia. Her first operation took place when she was seven weeks old. Dancing became her escape from hospitals and illness, but when she was ten she was diagnosed with hepatic pulmonary syndrome and the only cure was a liver transplant. Today, Abi has learned to be proud of her scars – they are what makes her ‘her’.

Take 2
Sometimes life puts rocks in our path. Ben’s life was sweet until the age of seven when he became seriously ill with autoimmune liver disease, sclerosing cholangitis and ulcerative colitis. Medication helped him to improve but eventually he deteriorated to the point where he needed a transplant. The support of his family helped him to get through this time and today he is on track to achieve his goals and is looking forward to the future.

Dealing with change
Flo has always loved the sea because it’s forever changing, one day calm, the next a deadly swirl of waves. She compares it to her own constant change: liver disease. Born healthy, everything changed at the age of 11 when she was diagnosed with autoimmune hepatitis, a serious and chronic liver condition. Today, with the support of the Children’s Liver Disease Foundation, Flo has learnt to live with change and the uncertainty it brings.

Walking in my shoes
What is it like to be normal? People always make assumptions – about what can or cannot be done. But Joanna always tries to challenge those assumptions. Although she knows she wouldn’t be the same person without liver disease, her struggles have made her stronger and today she has learnt to like the person she is.

I am me
Diagnosed with biliary atresia at the age of 10 weeks, Khai reflects on the fact that medication is a constant feature of his life, as are broken bones. Able to give support and reassurance to the parents of a baby newly diagnosed with the same condition, Khai can say that this is me – healthy and happy.

If I knew then, what I know now
Born with biliary atresia, Matt gives some advice to his past self, including how to deal with peer pressure and the need to take care of his liver by avoiding alcohol and salt. Matt’s message to his past self? That life gets better!!

Never give up
Football means everything to Stuart and has seen him through all the bad times. Diagnosed with autoimmune liver disease, ulcerative colitis and sclerosing cholangitis, his condition has pushed him forward to enable him to achieve both sporting and academic success.

Regrets, forgets and changes
Amy’s life crashed at the age of eight, when she was diagnosed with autoimmune liver disease. Struggling with bullying throughout her teenage years, Amy’s life was out of control and she began drinking, smoking and self-harming. Today, Amy is turning her life around with the support of her family and friends.

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