As you will all know by now; my cousin Georgie died of cancer aged seventeen. He had cancer three times during his life and after his third diagnosis; tests showed he had Li Fraumeni Syndrome. Not enough is known about this condition and my uncle has worked hard to set up The George Pantziarka TP53 Trust to help educate people on the condition and to provide support to other sufferers.
My uncle has created a leaflet briefly explaining what TP53 and Li Fraumeni Syndrome are as well as how people are affected by the condition. It’s not a full, detailed medical paper; instead it is supposed to be used as a quick introduction to the condition. It covers all the core points people need to know but it light on details.
This leaflet is aimed at people who should and need to know about LFS but for some reason they have little or no knowledge on the condition, i.e. GP’s, social workers, health visitors, nurses and other non-specialist medical staff. It can also be shown to school teachers.
Please follow the link and take a look at the leaflet. Let us know what you think about it and if you know anyone that should take a look at it, please send them the link! This time next week will be my birthday, which also means it will be the first anniversary of Georgie’s death and it’s about time people started to learn more about the condition that led to his death. This leaflet is only the start, we will be working hard to bring LFS and other TP53 condition to the forefront of people’s minds to educate them and save some lives. For Georgie.
xxx
No comments:
Post a Comment