Bethanie Venis
Bethanie's page
Fundraising for The British Porphyria Association
Story
Thanks for taking the time to visit my JustGiving page.
I am taking part in the Total Warrior event this August to raise money for the British Porphyria Association (BPA). BPA is a charity very close to my heart, due to me being a sufferer of Erythropoietic Protoporphyria (EPP). EPP is a rare cutaneous porphyria. It is incurable. In UV light, the skin becomes very painful (itching and burning) and can swell up. Exposure to light, for as little as a few minutes, causes burning pain in exposed skin, which may be so severe and persistent that it prevents sleep for several nights. Pain killers do nothing to alleviate the symptoms. Sunblock does not prevent this reaction at all. The only thing you can do is cover up from head to toe with thick dense clothing, i often suffer from heat stroke in warmer months, and get the strangest of looks from people. When i was younger i didn't like going out because of the comments about my gloves, hat and long sleeves when it was boiling. The time of exposure to light, before the pain starts, varies from one person to another, as does the time taken to recover once out of the light. Light does not always need to be direct – light reflected off water, sand or snow, or passing through window glass, and some light bulbs may also cause symptoms. In EPP, there is a shortage of ferrochelatase enzyme, which normally helps to convert protoporphyrin into haem by adding iron to it. This deficiency leads protoporphyrin levels to build up in the blood. As blood passes through the skin, the protoporphyrin absorbs energy from light which sets off a chemical reaction that damages the surrounding tissues and causes burning which I can only describe as like having your skin immersed in boiling hot water, it feels like you're on fire!
I am aiming to raise awareness of my condition and the other forms of porphyria because I have found the majority of people have never heard of it, including doctors and getting a diagnosis is very difficult!!
Any donation, big or small, will be greatly appreciated! Thank you in advance
I am taking part in the Total Warrior event this August to raise money for the British Porphyria Association (BPA). BPA is a charity very close to my heart, due to me being a sufferer of Erythropoietic Protoporphyria (EPP). EPP is a rare cutaneous porphyria. It is incurable. In UV light, the skin becomes very painful (itching and burning) and can swell up. Exposure to light, for as little as a few minutes, causes burning pain in exposed skin, which may be so severe and persistent that it prevents sleep for several nights. Pain killers do nothing to alleviate the symptoms. Sunblock does not prevent this reaction at all. The only thing you can do is cover up from head to toe with thick dense clothing, i often suffer from heat stroke in warmer months, and get the strangest of looks from people. When i was younger i didn't like going out because of the comments about my gloves, hat and long sleeves when it was boiling. The time of exposure to light, before the pain starts, varies from one person to another, as does the time taken to recover once out of the light. Light does not always need to be direct – light reflected off water, sand or snow, or passing through window glass, and some light bulbs may also cause symptoms. In EPP, there is a shortage of ferrochelatase enzyme, which normally helps to convert protoporphyrin into haem by adding iron to it. This deficiency leads protoporphyrin levels to build up in the blood. As blood passes through the skin, the protoporphyrin absorbs energy from light which sets off a chemical reaction that damages the surrounding tissues and causes burning which I can only describe as like having your skin immersed in boiling hot water, it feels like you're on fire!
I am aiming to raise awareness of my condition and the other forms of porphyria because I have found the majority of people have never heard of it, including doctors and getting a diagnosis is very difficult!!
Any donation, big or small, will be greatly appreciated! Thank you in advance