A whole lot of learning!

Apologies for my lack of blog posts recently, I have been busy writing my final ever piece of work for uni, then the dreaded job hunt started and I had to have a week off running after having routine physio (my physiotherapist is very strict, haha!) yet you’ll be happy to know my proper training programme began this week!

You may think I may not have much to write about, but I want to tell you about what I’ve been doing for the last two months or so. I’ve been on my final year uni placement with the Children’s Liver Disease Foundation (CLDF). This opportunity came up in Sept and I knew it was too good to pass. As I’ve said before, I’m now at the age that Joseph sadly passed away at so my thoughts are turning to the things I face, which he must have also faced on top of fighting his liver disease and I felt this placement was the best way to learn more about the fifth biggest killer in the UK.

CLDF is a NATIONAL charity with ONLY 15 STAFF! I can tell you now, they work their socks off to make sure their work reaches all parts of the U.K. They support those diagnosed with a childhood liver disease up to the age of 25 and their families, including those diagnosed at birth and in later childhood. They do this through putting on events for families and young people, providing support and signposting, advocacy, helping young people with the transition from children’s services to adults and helping to fund and facilitate vital research into liver disease with partner organisations such as the British Liver Trust.

I’ve witnessed first hand the brilliant work CLDF do and have met some of their wonderful young people through helping to facilitate an outdoors residential, attending clinic visits and meeting young people in the office. I’ve also been able to learn more about different liver diseases (there’s over 100 and counting!) which made me look more into Primary Schlerosing Cholangitis (PSC) which is the one Joseph suffered with. I’ve also come across many different attitudes and perceptions that young people hold of their liver condition which has been a bit of a shock admittedly. Some get on with life, some suffer low confidence and social isolation, some experience bullying, some feel it has devastating effects on their future prospects, some are angry with their liver disease. Whatever they feel CLDF is there to support them through it. It makes me wonder what emotions Joseph went through as he was diagnosed at 17 and lived with the condition for a further 7 years. I know he took every moment and lived it as his last. One time in particular sticks in my memory, but that’s another blog post for another day.

One day I hope to do some fundraising for the charity once my Great North Run journey is over, but if you’ve been intrigued to find out more, I urge you to get in contact and get fundraising for a small charity that makes a HUGE impact. The link to the website is at the end of my blog and if you type Talk Tell Transform into YouTube you will find some truly inspiring and honest videos for young people themselves telling their digital stories about life with a liver condition. The impact these had on me was far greater than I could have imagined.

Apologies for a rather long blog post (I could write so much more!), but it’s been a long time coming and I am keen to spread the word about the work of both CLDF and the British Liver Trust, so please continue to share my blog posts- you never know who it could impact on!

Until next time, keep loving your liver!

Siobhan 🙂

https://www.childliverdisease.org

https://tribute-funds.everydayhero.com/uk/liam-siobhan

https://www.britishlivertrust.org.uk

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