Please find below some recent videos and interviews done to raise awareness of porphyria. Patients have shared their personal experiences with the disorder and many of you will relate to the problems they have experienced.
This video was kindly put together by Berni Botto, a journalism student from Kent, who spent a number of months making a documentary about the difficulties people face when trying to get a diagnosis for porphyria.
John Chamberlayne (variegate porphyria): https://www.youtube.com/watch?v=KaRyVtRitv0
Elizabeth Gill (acute intermittent porphyria): https://www.youtube.com/watch?v=Z_kFoOXRyKM
Suzanne Burrell (acute intermittent porphyria): https://www.youtube.com/watch?v=8wN5By3wQVQ
This video from Dr Lisa Kehrberg, a doctor in the United States who also suffers from acute intermittent porphyria, is very powerful: https://www.youtube.com/watch?v=XzLhHlcR_ro&sns=fb
Sue Burrell, from our committee, was kindly invited by the TEDx University of East Anglia to speak at their first TEDx event in February. Sue talks about living with AIP and its complexities as well as about rare diseases and the work she does with the BPA… Her talk, entitled: ‘Try, try, try: my porphyria fight’ is now available to watch here:
EPP video log by Jared Ulmer: If you suffer from EPP, or just want to know more about it, then take a look at the Porphyria J channel on You Tube. Each video is around 5 minutes long and there are 13 episodes which cover an impressive range of topics, including: What is EPP? What causes the reactions? What’s it like to live with EPP? What’s it like to be in a relationship and bringing up kids when you have EPP? and more… Although the session where Jared experiments with using a sunbed is quite radical (episode 10), this series is one of the most accessible resources we’ve come across. It’s a very positive approach to raising awareness of EPP and great to call on when you can’t face trying to describe the condition for the millionth time. If you suffer from EPP, watching the series is a must, it will help make you realise you are most definitely not alone.
Search You Tube for Porphyria J or visit www.youtube.com/channel/UC7SYTLc6RSGptlHHQ8Aapmg
See the latest installment from Jared here:
Videos on EPP from the US – thank you NBC/Dateline: Please find below a couple of links to a really interesting documentary on EPP – this was aired in the United States on NBC … It is a very interesting watch for anyone with EPP or for anyone who supports someone with EPP… The BPA would love to be able to arrange some form of summer camp/event/holiday exchange for children with EPP – and would love to model it on the Camp Sundown provided in the US – let’s hope that this is something we can do in the not too distant future. https://vimeo.com/131585885 https://www.youtube.com/watch?v=qkdEfxXVlGg