Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile, causing painful blisters and scarring and can affect the mouth, throat and digestive tract as well as the surface skin anywhere on the body.

 There is currently no cure.  Medicines are used to treat infections and reduce pain.  Surgery is often required where EB has caused narrowing of the food pipe or to treat problems with the hands.

Our ‘team,’ me (Laura), Chris, Lindsay, Sue and John, here at Pontus have undertaken this, 100km in August, challenge to raise awareness of EB and because a friend’s gorgeous granddaughter, Darcy, is living with this debilitating condition. 

we will aim to each clock up 100km by running, cycling, walking and swimming throughout August.

We would be so grateful if were able to make a small donation to help with research and support families caring for loved ones with EB. 

Since the Coronavirus progressed to a pandemic there has been a huge increase in demand for DEBRAs support services. So far, every DEBRA Member has been able to access any support that they need. Please help support my challenge so that everyone with EB can continue to get the support they need and deserve.

DEBRA are the only charity supporting the EB Community through grants to help members get access to food supplies, assisting with other financial issues, securing dressing supplies and supporting mental health and wellbeing. Key issues under lockdown are loneliness, anxiety and fear and their Support Team are doing all they can to talk to and stay in touch with vulnerable members, including new virtual support groups.