To the Readers' Forum:
This week is National Epidermolysis Bullosa Awareness week.
Epidermolysis Bullosa or (EB) is a rare genetic skin disease that our daughter Alyssa was diagnosed with at birth 7 weeks ago. It is present in 1 out of every 50,000 births.
The skin-the largest organ in the human body-is composed of three layers; an outer layer (epidermis); a middle layer made up of collagen and elastin; and a sub-layer of protective fat which stores nutrients. In unaffected skin the layers work together to produce "healthy" tissue that is durable and resistant to everyday wear and tear. With EB, the second layer of skin is genetically compromised.
Now imagine having skin so fragile that every touch or even the slightest friction-such as getting dressed or showering-can cause severe and painful blisters all over your body. Our skin offers protection from outside elements and infections and helps our body to regulate temperature. But imagine on a daily basis having to create an artificial layer of skin to get the same protection. Daily bandaging of wounds is a fact of life for people with EB. A daily bandage change can take up to 3 hours and cost the average family up to $5,000 per month in supplies. Because of repeated ongoing blistering, for some there is the inevitable loss of limbs and extremities. Severe ongoing blistering in the throat also necessitates feeding through a G-tube because of difficulty swallowing. There is no cure for EB. Only treatment and pain management.
Today, there are more occurrences of EB than Cystic Fibrosis, yet, most Americans have never heard of EB. I am reaching out to your publication to help spread awareness of this debilitating disease. There are many patients and families affected by EB whose daily struggles, strength and courage, demonstrates the human spirit of endurance. Research on improved treatments and a cure is vitally needed to help these families who have suffered and endured enough.
One organization that has created a voice for EB patients and their families is the Dystrophic Epidermolysis Bullosa Research Association of America (Debra), a national non-profit organization that funds research for treatment and a cure and provides direct services and support to EB patients and their families.
Anthony and Kate Cusimano