As a passionate advocate, I am writing about an issue that is very important to me: medical research funding. Specifically, I am writing to urge you to support an increase in funding for the research of a rare disease Epidermolysis Bullosa.
I advocate for those who suffer from this devastating and rare skin disorder and research is key to making much needed progress in treatments and, hopefully, a cure for Epidermolysis Bullosa.
Epidermolysis Bullosa (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 can often times be 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.
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.
EB comes with numerous challenges aside from dressing changes. Despite any amount of care, wounds still occur and with the wounds comes scarring. 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.
Research on the genetics of EB and improved treatments are vitally needed. Investing in research will lead to better treatments and better lives for patients living with rare diseases like EB. Please support an increase in funding in the coming fiscal year.
Thank you for your consideration.