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? 

Click attending to my Facebook Event: https://facebook.com/events/s/bred4porphyria-a-week-of-aware/539188363447241/?ti=wa 

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!

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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