Karen’s GSR for Debra

I’m running the Great South Run to raise money for Debra who support those directly affected by EB like my dear friend’s daughter Jasmine, who was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). 

This is an extremely rare disease that affects her entire body, causing her to be in excruciating pain every single day. Jasmines form of EB means that the 'glue' that holds the layers of skin together is missing, causing her skin to shear off, blister or tear at the slightest touch. Her body is bandaged from her neck to her toes. The wounds are often compared to those of 3rd degree burns. Imagine then, having to endure 4-5 hour full dressings changes every other day for your whole life. But the thing is - Jasmine doesn't have to imagine, this is her life, and it has a devastating affect on her whole family.

The disease comes with other complications - Jasmine also has to deal with osteoporosis, partial kidney failure, gastronomy feeds, regular blood transfusions, procedures to release strictures of the throat and inevitably, mental health difficulties. Any one of these on their own is enough to bear. 
This isn't the life a 12 year old should ever have to endure - we need a cure and we need it now.

This is where you can help. Please donate whatever you can to help find a cure, and enable Jasmine, and others just like her, to experience a quality of life they deserve.

Thank you for taking the time to read Jasmine’s story.