The story of Emily
When I was born my mother gazed down at me and was softly stroking my fingers. Right in front of her eyes she watched a blister form and knew something was wrong. Shortly after, I was diagnosed with Epidermolysis Bullosa.
My name is Emily and I am now almost 30 years old. I have decided to share my story because when I was growing up I would question if I could do certain things and had a hard time imagining what my life would look like. I have learned that people with rare diseases become problem solvers, and with modifications, it is still possible to live a very full and happy life.
A little about EB (short for Epidermolysis Bullosa) makes your skin extremely fragile. Children with EB are often called Butterfly Children in comparison to how fragile a butterflies wings are. Skin can open or blister at the slightest touch and affects the skin on the entire body and internally as well including the mouth and throat. The form of EB I have is called Dominant Dystrophic and is a milder form, in more severe forms of EB it can be life-threatening and can lead to skin cancer. One of the largest struggles for all people living with EB is fighting infections since we are always dealing with open wounds.
Growing up I wasn’t able to participate in sports or certain school activities. However, my parents saw how much I loved art and always supported that passion by signing me up for every type of art class under the sun! From there my passion for design grew and I went to OCAD University in Toronto, CA for Material Art and Design. For my thesis project, I worked with the EB community to design more comfortable and fashionable bandages.
Throughout my 20s after graduation I traveled and lived abroad working for a women empowerment initiative in India; did a year working holiday visa in Australia, and backpacked through 30 countries. Upon returning to Canada I accepted a position for a Canadian non-profit called MiaThrives, which focuses on supporting the emotional needs of Butterfly Children in Canada. I am passionate about sharing my personal experiences to help others in the EB community. I have shared my journey navigating pregnancy with a rare disease to share information that might assist others. Having a family was something I always dreamed of but wasn’t sure if it was possible for me. It has taken a bit of extra planning and advocating for myself in medical settings but I have a healthy toddler and a career I am passionate about!
To learn more about MiaThrives visit: https://miathrives.org/
Debra Canada has also greatly helped me throughout my life living with EB by providing me with creams, bandages, and medical supplies that aren’t covered. I often need to travel far distances for medical appointments and Debra assists with flights and hotels. Through their Medical Assistance Fund, they supported my PGD IVF journey to help us start our family and I will forever be grateful to the organization for helping me and other Canadians living with EB.
To learn more about Debra Canada visit: https://debracanada.org/