When Poppy was diagnosed with Epidermolysis Bullosa (“EB”) in 2011, the outlook was bleak. Every single day for the last 12 years has been a battle against this horrendous and painful skin condition.

Poppy’s Mum Kate explains:

“Life with EB is extremely difficult for Poppy and our family. Her condition makes her very fragile, and the slightest knock or bump can result in irreparable damage to her skin. Poppy’s day is dominated by 3 hours of painful dressing changes. She is bandaged from the neck down to not only protect her skin but also to keep her open wounds clean.”

EB is extremely rare – there are only 5,000 people like Poppy in the UK who are affected - but the impact on the lives of those with the condition cannot be exaggerated. It causes pain for every second, in every minute, of every day and is unrelenting in the distress it causes.

At present there is no cure and no effective treatment and, as a relatively rare condition, EB has been easy to ignore. Treatment is limited to chronic wound care and pain control.

Thanks to amazing charities such as Cure EB, funds have been raised to support early-stage research into EB. Progress has been made, and the prospects for finding a cure for both EB and other genetic conditions, are better than ever – but this will not happen without more funding and continued research.

A group of 10 (very!) novice cyclists, including Poppy’s mum Kate, are cycling from Paris to London to raise £25,000 for Cure EB. These funds will be used to support the ground-breaking research carried out by laboratories such as the Imagine Institute for Genetic Diseases in Paris… all with the aim of finding a cure for this devastating condition.

All of those cycling have been inspired to borrow bikes, invest in padded shorts, and to take on this challenge (and it genuinely will be a challenge for us!) to enable research into a cure to continue. We will be cycling close to 200 miles from Paris, home of the Imagine Institute for Genetic Diseases, to near to where Poppy lives on the outskirts of London. As hard as this ride will be, it won’t compare to the pain and struggle that Poppy and other people with Epidermolysis Bullosa have to endure every single day of their lives. It's really hard to say and hell to live with!

We’ll leave the last words with Kate, Poppy’s mum:

“Poppy amazes us with her courage and determination. Yes, EB is dreadful and gets her down, but she is still our happy little girl who through everything she endures always manages to keep us smiling with her wonderful sense of humour. What we want more than anything in the world is for her to be free from this awful condition and live a normal life without pain.”

Please make a donation and show your support.

Please help us to improve the lives of everyone with EB.

xx