Imagine if every step you took was agony or if even putting a shirt on was painful. That is the reality for children and adults living with a rare genetic condition called Epidermolysis Bullosa (EB).
DEBRA Canada is the only Canadian charity dedicated to supporting Canadian families affected by EB. You can support their 1st ride for EB on September 24 in Niagara.
500,000 living with EB
There are an estimated 500,000 people worldwide living with EB. The condition is always painful, frequently very disabling and life-threatening. EB affects both genders and every race and ethnicity. People with Dystrophic EB have a greater incidence of an aggressive form of skin cancer.
I first came across Epidermolysis Bullosa (EB) when I was studying on the International Interprofessional Wound Care Course through the University of Toronto. Much of my professional career has been around the wound care arena. I have long admired the work of DEBRA as well as the incredible specialists working with these children and adults.
Butterfly Children
The image above appeared in the excellent Ottawa Citizen article called ‘Butterfly child’ dreams of the Northern Lights, describing teenagers Jonathan Pitre’s experience. Jonathan sadly passed away in 2018 aged 18. The term Butterfly Children originates from the view that the child’s skin is as fragile as a butterfly.
You can learn even more about Jonathan’s EB by watching this TSN documentary The Butterfly Child.
DEBRA Canada website also provides information about their patient programs and education about this rare condition. Find them on Facebook and Twitter.
Ride for EB Fundraiser
The 1st Ride for EB takes place along Niagara Parkway on September 24. It starts at Kingsbridge Park to Fort Erie (30km) or back for a total of 60km.
According to DEBRA Canada’s Project Coordinator Erin Hoyos, DEBRA Canada relies heavily on fundraisers and donations from the community to help support and develop programs such as the DEBRA Canada Medical Assistance/Financial Assistance Fund.
“Our cause is still relatively unknown… in the medical community EB has been referred to “the most painful condition you’ve never heard of”. Our ride will hopefully reach out to a new group of potential supporters who can help spread the word about EB.”
This fundraising event is ideal for those who cycle road or mountain bikes or have wanted to give it a try. Opencity Inc. will be among the riders at this event.
If you would like to volunteer for this event contact event organizers Jay Wilson, Director, DEBRA Canada at jay@debracanada.org, or Erin Hoyos at ehoyos@debracanada.org 1-800-313-3012.
Opencity Inc. thinks giving a spotlight to charities is important and one way we can be socially responsible.
Jon & Tina image credit Julie Oliver/ Ottawa Citizen. Other photos courtesy of DEBRA Canada