Epidermolysis bullosa (EB) is a painful blistering disorder that can leave children in excruciating pain throughout the day. The disease involves chronic blistering of the skin that requires constant care. The slightest touch can cause skin to fall off and leave a blister. Each day, most EB patients require bandaging to protect an exposed skin from worsening while try to avoid new blisters from starting on unbandage areas. And the delicate nature of the epidermis is not limited to the skin. Layers in the mouth, nose, anus, and other openings can all be at risk for blistering.
Right now, there is no approved treatment for EB and families must abide by the constant application and reapplication of special, non-adhesive bandages and lotion to keep the child as healthy as possible.
Sadly, many of the supplies needed to care for a EB patient are not covered by medical insurance.
Fortunately, the patient advocacy group, DEBRA Canada does have a medical assistance fund that can help families.
In an exclusive interview, Tina Boileau, President of DEBRA Canada talked about the assistance fund as well as other programs the group does to help EB patients.
“Supplies and dressings for EB can cost up to $6000 a month and lot of that may not be covered by provincial healthcare or private insurance,” said Boileau, adding that their program can help families cope with those expenses. The money can be used for supplies, travelling to a special EB center, or any other items that can improve quality of life (e.g., bamboo sheets, wheelchair, etc).
More information about those assistance grants can be found here.
Knowing that the best way to educate families about EB is to attend conferences, DEBRA Canada also provides funding for 10 families to attend the biennual EB conference with the next one scheduled this summer in Arizona.
Boileau said that having people able to attend those conferences is essential. “It’s important to network and be with people with very similar circumstances and who understand the challenges.”
Balancing the financial with the emotional, DEBRA Canada also has some money for patient’s wishes—the apply named “Fund a butterfly” program. These funds allow a person to fulfil a wish of theirs while also establishing the recipient as an ambassador for EB and DEBRA Canada. These wishes can involve sending a child to see the Northern Lights or retrofitting a car so that the EB patient can drive it. Each wish is different and DEBRA Canada does their best to fulfil their dreams.
Finally, DEBRA Canada, knowing that having a child born with EB is a shock to the newborn parents, offer a EB Patient Care Kit that they mail to the parents upon first learning of the birth of a EB baby. The package provides practical information about wound care, medical supplies, provincial healthcare service options and much more. The package also includes some specially-made clothing and basic medical supplies that may not be known to hospital staff unfamiliar with EB.
These are just a sampling of the many ways — financially, intellectually, and emotionally — that DEBRA Canada helps its patient population. Boileau said, “Its really understanding what your patient population needs. What can benefit them? What can improve their life? How can we help? These are the types of questions we ask regularly, both informally and at board meetings.”
For more information, visit http://debracanada.org