Bethan Rees

#bRED4Porphyria - A week of events!

Fundraising for The British Porphyria Association
raised of £200 target
by 30 supporters
We advocate for porphyria patients to improve their quality of life


My name is Bethan Rees, and I have Acute Intermittent Porphyria (AIP), one of the many types of porphyria a person can be diagnosed with. My auntie, my grampa, my late mother, and potentially other members of my family also have been diagnosed with AIP. 

What is Porphyria? 

  • The porphyrias are a group of relatively rare genetic disorders.
  • They are called the porphyrias because they cause a build up of chemicals called porphyrins (purple-red pigments named from the Greek for purple) or the simpler chemicals used by the body to make porphyrins.
  • The porphyrias are broadly categorised into acute and cutaneous (skin), according to the symptoms suffered, although some acute porphyrias also suffer from skin symptoms (VP and HCP).
  • The severity of symptoms varies dramatically in all types of porphyria, but no matter which type, the more knowledgeable about their condition a patient is, the more they are likely to stay well.

What can you do to raise awareness? 

Take part in one of the events throughout the Awareness Week 18th-25th April 2020. (Description of events in Cover Photo) 

Click attending to my Facebook Event: 

and watch and interact with live streams/general videos put out throughout the week, and use the hashtag #bRED4Porphyria !

Share videos, this fundraising page, Facebook posts etc with friends and encourage the awareness of this condition so hopefully, it can be further understood!

Join in the final party on Saturday the 25th April! We will paint the town red from indoors! 

The schedule: 

SATURDAY 18th April: Paint it RED: The “launch!” I’ll set up a Facebook live, and also release one or two awareness videos, explaining what Porphyria is and what The British Porphyria Association do. On Facebook Live expect silliness, I might set up a game people can join in on, do dares, etc. As it is the first day I will also be sporting bright red hair!

SUNDAY 19th April: Red Pajama Day: how do you spend a pajama day? I’ll do a games livestream potentially on Twitch, or YouTube, or Facebook. I will also spend the day searching, watching and playing “Red” things - movies, YouTube videos, games with “red” in the title etc.

MONDAY 20th April: Wear RED and get active! In the morning I’ll take part in Joe Wicks PE session (who should be wearing red for the day hopefully! 🤞🏻) and an evening of Just Dance songs, as requested by whoever joins in live. I can not dance at all, so watching me flail about will be comedy gold.

TUESDAY 21st April: Tune in live to Facebook to watch me eat a tin of Heinz beans! (I can not express how much I HATE beans) Also- everything I eat that day will be red or have red food colouring added to make it red!

WEDNESDAY 22nd April: Wear RED to work day: This day you will unfortunately only get minimal updates from me. I will be focusing on my work, hosting a lunchtime charity workshop and, wearing red, obviously!

THURSDAY 23rd April: RED Art/Construction day: This is an art attack, this is an art attack. This is art attack day! I will follow some vintage art attack episodes hosted by the red jumpered legend, Neil Buchanan! I will post my shoddy artwork, and encourage you all to join in too!

FRIDAY 24th April: RED Creative Writing Day: Closer to the time I will announce what time I’ll host an Isolation Creative Writing for Wellbeing Workshop online. Please do take part! I will also be posting videos of poets all over the country reading “red” themed poems that they’ve either written or love. With maybe one or two little surprises thrown in, as Creative Writing is my jam!

SATURDAY 25th April: Paint the (online) Town red! Come and have a party at the most happening place to be - your own house! I’ll host a quiz (time TBC) followed by just hanging out, and happy to take fun suggestions! Just come say hello or maybe pop what you would’ve spent on a drink or quiz entry into our just giving page to raise some money for The British Porphyria Association.

I can’t wait to see your #bRED4Porphyria hashtags and hope to hear you participating in this event!

Is there anything you are thinking of doing?

I’ve already had some people excited to read some poetry - and a friend potentially relaunching their YouTube channel to do an “all things red” game video!

I’m incredible excited to take part in this event, and want to thank everyone for their support and participation so far.

To become more aware about Porphyria in general, please visit:

The acute porphyrias (AIP, ADP, VP and HCP) are grouped together because acute attacks of porphyria occur in each one. These attacks are uncommon and are often difficult to diagnose. About 1 in 75,000 people suffer from them.

Acute porphyria attacks are often triggered by exposure to commonly prescribed drugs, illegal drugs, alcohol, dieting, stress, infections, viruses and hormonal fluctuations.

The main reason I want to support this association is because I believe there should be more awareness and interest in this, typically rare, condition. It was a contributing factor to my mother's passing last year, as an infection triggered an attack during an emergency operation. 

My auntie was also severely affected by a series of acute attacks (causing the family to find out about this condition). In both cases, the hospitals could not diagnose or treat this condition straight away because of lack of knowledge around the subject. Going so far as having information and treatments sent from specialist hospitals on the day of the attacks. (I would like to add, all staff involved were doing the best in the situation, and this is no negative reflection on their part. I am incredibly thankful of the brilliant work they did, and continue to do.) This condition needs further research, and further awareness and funding can assist this.  

The more awareness and funds raised for this association, the better they can be supported in the incredible work they already do. I have contacted them a number of times in regards to queries about my condition and have always received useful and prompt advice. 

The British Porphyria Association aims are to:

  • Improve understanding of the porphyrias.
  • Educate patients and their families about their condition.
  • Provide an emotional support system for patients and their families.
  • Provide helpful contacts with doctors and specialists.
  • Enable further understanding for doctors and other healthcare professionals.
  • Provide a grant/aid fund so that members can apply for help with certain costs incurred because of their porphyria.
  • Keep patients up to date with new research.
  • Provide funding for new research and encourage research establishments to consider porphyria for research.
  • Raise awareness of the porphyrias and ensure that the portrayal is always accurate.

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About the charity

The BPA is committed to advocating for, supporting and educating porphyria patients, relatives and medical professionals, so as to improve the quality of life for those living with the different types of porphyria. We promote disease awareness and the advancement of research into new therapies.

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+ £97.50 Gift Aid
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