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.
In 2022, we tried something new – an outdoor activity day for children & young people with erythropoietic protoporphyria (EPP). Thanks to protective clothing and the excellent tree cover at Go Ape Temple Newsam, our adventurers were able to avoid the sun and concentrate on the most important thing – having fun!
Here’s how they got on:
In this video, Sue and Liz talk about the importance of genetic testing / family screening when a member of the family has been diagnosed with an acute porphyria.
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.
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
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.
Alnylam Pharmaceutical’s TWO OF ME: LIVING WITH PORPHYRIA film. It is ‘A story of human strength, perseverance and survival, chronicling the lives of seven people around the world living with acute hepatic porphyria (AHP).’ The film is directed by Emmy-nominated filmmaker Cynthia Lowen and sponsored by Alnylam Pharmaceuticals.
A wonderful awareness piece that speaks with children and their families from the USA affected by erythropoietic protoporphyria (EPP). Summer is all about baseball games, laying out by the pool, barbecues in the sun. But there are a handful of kids who won’t enjoy these activities this season, or at any time of the year.
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.