Help raise awareness of rare disease

Help raise awareness of rare disease

October 25-31 is National Epidermolysis Bullosa Awareness Week. I would appreciate if you would help my family spread the word about this disease. My daughter, Kayla Roach, and granddaughter, Alivia Roach, have a rare genetic skin disease called Epidermolysis Bullosa. It is characterized by skin so fragile that the slightest friction can cause severe blistering - inside and outside the body, and it is present in one out of every 50,000 live births. It is a genetic condition and is not contagious. Today, there is no cure and the only treatment is daily wound care, bandaging and pain management.

Kayla and Alivia were both diagnosed during their second summer of life. I know this is a weird way of describing the time but it was the first time that they were walking with shoes during the humid weather. That was the trigger. Humidity is not their "friend." It causes their skin to swell, become sensitive to touch and causes their blisters to form on their feet. As Kayla has gotten older, she now gets them on her hands and in her mouth. My daughter is a very strong person who has never let this disease define what she could do. In elementary school, she was on the jump-roping team at Northern Lincoln, a cheerleader for the town of Lincoln's football/cheerleading association, and at Lincoln High School, she cheered for the basketball team. She is now a wife and mother of two. Unfortunately, there was a fifty-fifty chance that she would pass this on to her children. Fortunately, her oldest daughter, Jaelyn, was born without it. As they say, you always want better for your children, so because Alivia has it, Kayla has started a fundraising effort to help the Dystrophic Epidermolysis Bullosa Research Association of America - DEBRA - foundation find a cure.

There are two ways you can donate. You can purchase a handmade key chain for $5 that includes a card that gives basic information on EB and contact information for DEBRA. There is also an online fundraising page set up in my granddaughter's name if you would like to make a tax-deductible online donation. Please contact Kayla at and she will give you the information. All proceeds will be donated to DEBRA.

There are more occurrences of EB than cystic fibrosis, yet most Americans have never heard of it. I am reaching out to you to help spread awareness of this debilitating disease. There are many patients and families like mine affected by EB whose daily struggles, strength and courage, demonstrated the human spirit of endurance. Research on improved treatments and a cure is vitally needed to help families like ours that have suffered and endured enough. One organization that has created a voice for EB patients and their families is DEBRA, a national nonprofit organization that funds research for treatment and a cure and provides direct services and support to EB patients and their families.

Visit or contact the DEBRA office at 212-868-1573 for more information.

Nicole Doiron