Setting up an online support forum for people affected by bladder cancer
Lydia Makaroff, President of the World Bladder Cancer Patient Coalition and Chief Executive Officer of Fight Bladder Cancer UK, highlights the importance of setting up an online support forum for people affected by bladder cancer:
Fight Bladder Cancer UK started from a very personal battle. Andrew, one of our founders, was diagnosed with a Stage 4, G3 bladder cancer in summer 2009. He had been experiencing symptoms for over 18 months but was misdiagnosed with an enlarged prostate. Faced with a poor prognosis and immediate life-changing surgery, Andrew and his wife T made contact with a fellow bladder cancer patient and his partner who had recently undergone the same treatment.
Just being able to talk to someone else who really understood what they were both going through helped them immensely. It also helped that the two carers could chat about what could be expected during surgery and recovery. It was these snippets of real information that made a difference in those early days. Despite the fact that bladder cancer was so common, they were amazed to find out that most people knew nothing about it, and there wasn’t a dedicated bladder cancer charity in the UK yet.
Once Andrew was recovering from his surgery, they started the process of setting up what was to become the charity Fight Bladder Cancer UK.
Firstly, we set up a Facebook Page called Fight Bladder Cancer. Then on 2 June 2010 we used that page to set up a private group called “Fight Bladder Cancer: Support”.
«The group slowly grew from 40, to 400, to almost 5000 members. Now we have a team of 10 moderators from around the world who monitor the pages and provide support to everyone who posts
Lydia Makaroff, President of the World Bladder Cancer Patient Coalition and Chief Executive Officer of Fight Bladder Cancer UK
It is a wonderful resource for anyone affected by bladder cancer. They can post trials and tribulations, and instantly receive support from others around the world who have gone through a similar experience.
You can find more information about Fight Bladder Cancer here
Explore and get inspired by more stories and examples like this one in our Start-up guide for bladder cancer patient groups.