Firewalking for EB
When you’re small and your parents tell you to stay away from the fire, you understand early on that it could burn and be extremely painful. Reaching adulthood and voluntarily agreeing to walk on hot burning coals would seem to be only for the mad!
So when charity Debra Ireland asked me to walk on hot coals to highlight living with the rare disease that is epidermolysis bullosa (EB), I somehow, in a moment of weakness, agreed to the madness.
Fast forward to a Friday night at the end of January and I find myself in a Dublin car park with another 30 hardy (and mad) individuals, about to challenge our deepest beliefs about fire and the damage it can do, by walking on coals burning at 1,300 degrees.
Living with EB
As well as fundraising to help families who are coping with EB, Debra want to help people understand what it’s like living with EB, a rare genetic skin blistering condition.
In reality, it’s like walking on burning hot coals. A mostly hereditary condition, and often described as the worst disease you’ve never heard of, EB sufferers have skin as fragile as the wings of a butterfly and must endure constant bandaging – when dressings stick, the skin often comes away too.
So as preparation for the fire walking, we spend two hours in a room with fire walking master Brian Moore who spends the time teaching us the power of our minds. Brian says the single most destructive force preventing people from achieving their goals and dreams is fear. So we need to face our fears by walking on fire. “If you think you can, you will and if you think you can’t, you won’t”, he tells the room. Afterwards, he assures us, we will be invincible…
In the audience is four year old EB sufferer Casey Connors and her mother Rachel as well as 13 year old sufferer Claudia Scanlon and her mother Liz. Aside from the hyping up going on, their presence is a reminder of the reality of living with a cureless disease. Both girls are on painkillers daily and live in fear of a fall as well as living with constant blistering skin and a risk of infection daily.
There are several variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful and very debilitating – daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Thanks to the mindset training, we all walked and bonded over our great achievement, cheered on by the Debra staff and EB families.
I’m still feeling invincible!
Frequently Asked Questions
Is EB contagious?
No, EB is not contagious. As it is a genetic condition it cannot be ‘caught’ by being in contact with someone who has EB.
How common is EB?
EB is a classified as a rare disease. An estimated 1 in 18,000 babies born in Ireland are affected by EB. Over 500,000 people have EB worldwide.
Is it only the skin that is affected in EB?
In very mild cases, yes, it is only the skin which is affected. In more severe cases however, the internal linings of the body (such as the mouth, oesophagus and intestines) can be badly affected as well.
If you’d like to support Debra, text BUTTERFLY to 50300 to donate €4. (DEBRA receive min €3.25).