October 25 to the 31, was Epidermolysis Bullosa awareness week, coined the worst disease you haven’t heard of, have you heard of it? This disease is a genetic skin disease caused from a mutation that affects the collagen production in the skin layers. Collagen creates structure and strength between the epidermis and dermis layers–this causes a wide range of medical issues such as blistering, wounds, trouble eating orally, and hand webbing. Any constant friction of the skin causes risk or injury. A large issue that comes about is the loss of individual fingers because of hand webbing. The constant blisters and wounds in between the fingers as they move confuse the body. As the skin heals over time, it may heal in a way that the fingers join together. This causes day to day tasks to be difficult, for example, daily activities such as opening doors or walking around tend to be challenging.
What can be even more challenging is the stigma that comes with the lack of knowledge of the disease. With it being such a visual condition, stares and unwanted attention is a hard thing to go through. Unnecessary questions and rude comments are a common occurrence Insecurity may arise. People with EB may feel outcasted for being different. This causes a negative effect on mental health. A bigger problem is the lack of knowledge of insurance companies. EB has many expensive procedures and daily care such as bandages and medicines that break the bank quickly. On average bandages cost $262 at least to higher than $2000+ a month. These must-have bandages without insurance can be a hard toll. The need for awareness is even greater when it comes to educating insurance companies. Some may deny they are necessary because they don’t understand the condition.
On a much lighter note, there is a very strong community of people with EB, family of people with EB, and other supporters. Debra is a nonprofit organization aiming to educate and connect people with EB. They host a conference to bring together people with EB, EB families, and medical professionals that may be of help or have any new treatments. The conference has fun events, food, educational panels, and places for people to meet others like them. The conference is held every two years and is an important date for everyone with EB. Go to debra.org to learn more or contact me, Rayne Wood, for any questions or more information.
