Nine year old Phoebe Crowson has Recessive Dystrophic Epidermolysis Bullosa (RDEB). This is a rare genetic inherited lifelong skin condition in which the skin is fragile and will blister and shear at the slightest touch which causes the equivalent to a third degree burn.
Blisters are not self-limiting and enlarge unless lanced and drained. It affects other mucosal membranes such as eyes, mouth and oesophagus causing painful blistering and scarring as healing occurs. raw areas are dressed with specialist dressings and can be very painful requiring oral pain relief. To date Phoebe has undergone six throat stretches and has never had a playtime at school.
The Phoebe Research Fund is a registered charity (1163875) and hopes to help sufferers by supporting our beneficiaries CURE EB (1158672) who facilitate essential research into this rare condition.
Mother to Phoebe I founded The Phoebe Research Fund in 2015. I felt it was extremely important to raise awareness of Epidermolysis Bullosa as it’s such a little known condition which affects less than 5000 people within the UK.
Helen has been an integral part of Phoebe Research since it began. Offering expertise in structuring and design, Helen offers a firm foundation to carry this small charity forward.
Husband to Helen, Ross brings a design flair which makes eveything we do look extra professional. A perfectionist by nature Ross is meticulous when it comes to tailoring our overall branding.