Story
My name is Fazeel Irfan, and I am raising money for Epidermolysis Bullosa (EB), a rare and extremely painful genetic skin condition that I have lived with my entire life.
EB is often referred to as “Butterfly Skin” because the skin is as fragile as a butterfly’s wings. For people living with severe forms of EB, even everyday activities such as walking, eating, getting dressed, or simply moving can cause painful wounds, blisters, and skin loss. EB affects far more than just the skin—it can impact internal organs, cause severe pain, infections, nutritional problems, anaemia, and many other life-limiting complications.
I live with Severe Recessive Dystrophic Epidermolysis Bullosa (RDEB), one of the most severe forms of the condition. Throughout my life I have faced countless hospital appointments, surgeries, daily wound care, chronic pain, and challenges that most people never have to think about. Despite this, I have always tried to use my experiences to raise awareness and support others living with EB.
For the past 8 years, I have attended Greenshaw’s secondary and sixth form, where I have organised awareness events and fundraisers to support the EB community. School has been a huge part of my life, and as I now prepare to leave after completing my final exams, I wanted to finish this chapter in the best way possible: with one final fundraiser for a cause that means so much to me.
This fundraiser is taking place as I approach the end of my school journey. It is my way of giving back, raising awareness, and helping create a better future for everyone affected by EB.
Alongside fundraising, I am passionate about raising awareness of EB and educating others about what life with the condition is really like. Over the years I have built a social media platform where I openly share my journey living with Severe RDEB, including the challenges, hospital stays, treatments, achievements and day-to-day realities of life with EB. My goal is to help people better understand the condition, inspire others facing adversity, and give a voice to the EB community. Through these platforms, I have connected with people from around the world and have been able to raise awareness of a condition that many people have never heard of before. If you would like to follow my journey and help spread awareness, you can find me on the following platforms:
The money raised will be shared between three incredible organisations that are each making a difference in their own way:
DEBRA UK – This is a charity very close to my heart as I am their official ambassador! They provide support, care, advocacy, community services and funding for research for people and families affected by EB throughout the United Kingdom.
To See All The Amazing Work Debra UK Does Click Me!
Cure EB – Focuses on accelerating research and developing treatments that have the potential to improve the lives of people living with EB and ultimately bring us closer to a cure.
To See All The Amazing Work Cure EB UK Does Click Me!
EB Research Partnership (EBRP) – Funds innovative research worldwide and works to accelerate the development of effective treatments and cures for EB. EBRP also plays a major role in raising global awareness of the condition through projects such as the documentary Matter of Time, which I was honoured to be featured in & I urge you all to watch to get a glimpse of what living with EB is truly like!
To See All The Amazing Work EBRP UK Does Click Me!
Every donation, no matter how big or small, will help support people living with EB today while also helping to fund the research needed to create better treatments and, one day, a cure.
Thank you for taking the time to read my story and support this fundraiser. Your generosity means more than words can express—not only to me, but to the entire EB community.
Together, we can help make a difference.
🚨 Fundraiser Update
Update! We Did It… But We’re Not Finished Yet! 💙🦋
Firstly, I want to say a huge thank you to every single person who supported my fundraiser at Greenshaw High School. Whether you donated, bought something from our stall, shared the fundraiser or simply stopped to learn about Epidermolysis Bullosa (EB), you have helped make a real difference.
Unfortunately, due to the extreme heat, our plans had to change at the last minute. Our Year 13 Leavers’ Assembly was moved from the afternoon to the morning, meaning parents were no longer able to attend. Although this meant we couldn’t reach as many people as we had hoped, we still had an amazing day raising awareness and funds for EB.
This fundraiser marks the end of my 8-year journey at Greenshaw, where I’ve spent years raising awareness for EB through fundraisers, assemblies, speaking opportunities and social media. It was incredibly emotional to finish this chapter in such a meaningful way.
But we’re not stopping there…
We’ve decided to continue the fundraiser with a second event this Friday at my old primary school - the very place where my EB awareness journey first began.
Every year the school hosts a Summer Fete, and a few years ago we held an EB fundraising stall there. Now that my younger brother attends the school, it feels like the perfect opportunity to return and continue what we started.
We’ll be selling Krispy Kreme doughnuts, refreshing drinks, homemade food and other treats, while continuing to educate people about EB and raise vital funds for the three incredible charities supporting this fundraiser: DEBRA UK, CureEB and EB Research Partnership (EBRP).
If you can’t attend but would still like to support us, every donation - big or small - helps us move one step closer to better treatments, better support for families, and ultimately, a cure for EB. I appreciate every single one of you that have supported us so far!
The journey continues…!
#FightEB
- Fazeel Irfan
