What is EB?
In order to even attempt to understand the life of someone who has Epidermolysis Bullosa (EB), think back to the worst blister you’ve ever had and multiply that 100 times. Now think of your entire body covered in blisters. This is the body of a child living with EB. Their beautiful face is usually blister-free. It’s hard to believe they can have such a great smile despite feeling the pain of all their blisters.
They don’t smile every day, though. Some days they can’t stand straight because they have a blister on the back of their knee. Some days they can’t sit for very long because they have a blister on their buttocks. Some days they can’t stand on their feet because the pressure causes too much pain.
The one thing they have in their favor is they were born with EB - - they didn’t acquire it over their lifetime. They never have thoughts of ‘I remember when’. Of course, they often think ‘I wish I could’.
* * Meet Rachel Nasuti * *
befriend EB was founded in honor of Rachel Nasuti. Rachel was born in 1990 with Recessive Dystrophic Epidermolysis Bullosa.
Because there is not a cure or a medication that can help these children, befriend EB was founded on the premise that it would raise funds to provide tangible items to improve the everyday lives of these children.
In the beginning, Rachel’s medical expenses averaged $3,000 per month. Now the expenses are about $1,500 to $2,000 per month. She is wrapped in several layers of gauze impregnated with Vaseline. Also, a feeding tube inserted into her stomach feeds her. She has had several hand surgeries. All of which were not successful. She also has had several esophageal dilitations so she can once again swallow her own saliva -- the skin breaks down in the esophagus and causes strictures. Several times a year Rachel wakes up with a scratched cornea in her eye -- the simple movement of rubbing her eyes causes scratches.
Rachel endures a three-hour bath session. She soaks in bleach water for up to thirty minutes and then takes a shower. On some days the water pressure from the shower causes extreme pain when it hits her open wounds. Next, her parents dress her in layers of bandages. (Rachel can usually hear the neighborhood kids outside playing during her bath.)
There isn’t a cure for EB and there isn’t a pill to take while she waits for a cure. Every day she hopes to make it through without a new blister mysteriously developing. But that is very unlikely.
