Dear Editor, (In some areas, you may be able to get their name)
My name is __________, and I am writing to inform you of a rare and devastating genetic disorder known as Epidermolysis Bullosa (EB). EB is a rare genetic connective tissue disorder that causes painful blistering of the skin and the mucous membranes. It affects one in every 50,000 live births and is often times fatal within the first year. Those affected lack the proteins that prevent the skin layers from acting independently from one another resulting in extreme fragility of the skin. This means that the slightest of touches, even a hug can cause excruciatingly painful blisters and wounds. These wounds are very susceptible to infections which can often times be lethal.
Those affected endure extreme pain daily, there really is never any reprieve. In order to protect the skin from infections and additional wounds, one must be wrapped in special bandages that do not adhere to the skin. These bandages must be changed frequently…a tedious and painful process. However since there is no cure, this is the only effective treatment. These dressing changes and baths can take up to 5 hours or longer. The process is excruciatingly painful, and is often accompanied by extreme anxiety endured by the affected child.
EB comes with numerous challenges aside from dressing changes. Any mucous membrane can be affected. Eyes can blister causing painful corneal abrasions, and sometimes permanent vision loss. Blisters in the throat cause strictures making it almost impossible to eat and possibly cutting off the airway. Hands and feet begin to fuse from constant scarring making mitten deformities. This scarring can cause deformities in the hands and feet as the skin begins to fuse together often causing a club effect. Another complication as a result of the chronic damage to the skin, is skin cancer, which is typically fatal in these cases.
In addition to physical trauma, sufferers also endure mental and emotional pain as well. EB is devastating…it is brutal. Research is vital for putting an end to this tremendous suffering. EB is very rare and lacks the mass appeal that brings with it public awareness and funding. However thanks to organizations like Pioneering Unique Cures for Kids and individuals advocating, it now has a growing voice in the private sector to help augment the limited government and industry investment to help support this vital research.
I am reaching out to you and your publication to help in raising awareness for EB, to help educate and provide insight into a disorder that is known by so few. For more information regarding EB and some of the research currently being conducted, please visit www.puckfund.org.