Please find below some recent porphyria awareness videos and interviews created to raise knowledge and understanding of porphyria. Patients have shared their personal experiences with the disorder and many of you will relate to the problems they have experienced.
If you find these porphyria awareness videos useful and interesting, you may wish to consider attending one of our regular patient days.
As part of the 2021 Awareness Week campaign, Ian (AIP husband) and Antony (EPP patient) talk openly about how their lives have been, and are still being, affected by porphyria, whilst cycling using the indoor cycle platform, Zwift.
Inspriational Ania tells the story of her AIP journey in this heartfelt video.
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
With new developments in gene silencing, James Gallagher provides a wonderful description of a new class of medications that could be significant for the acute porphyrias… Sue Burrell provides a patient perspective on behalf of the British Porphyria Association on BBC Breakfast News.
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:
John Chamberlayne (variegate porphyria): https://www.youtube.com/watch?v=KaRyVtRitv0
Liz Gill (acute intermittent porphyria): https://www.youtube.com/watch?v=Z_kFoOXRyKM
Sue 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
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.