Awareness videos

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.

#Let'sTalkPorphyria: Zwift cycle/chat

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.

 

Overexposed: a video about EPP

Andrea Minoglio presented this amazingly moving documentary: ‘Overexposed: a film about light and erythropoietic protoporphyria’ at the International Congress on Porphyrins and Porphyria (ICPP) in Milan in September 2019:

Overexposed from Overexposed on Vimeo.

Ania and AIP

Inspriational Ania tells the story of her AIP journey in this heartfelt video.

EPP related videos/interviews

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 

“Out of the Shadows” – Dateline NBC from Tommy Nguyen on Vimeo.

Gene silencing and porphyria

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.

Try, try and try: my porphyria fight

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:

Acute porphyria interviews

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

Porphyria: Diagnosing a rare disease

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.