Madam Speaker, epidermolysis bullosa or EB is a group of rare and debilitating genetic skin diseases in which the skin and mucous membranes are so sensitive that the slightest touch may cause painful blistering. EB is a lifelong disease often present at birth, which causes severe physical, emotional and financial hardships for the affected persons and their families.
There are two types of EB, non-scarring and scarring. The non-scarring type varies in form from the severity of seasonal blistering in the hands and feet to widespread blistering during much of the year. In some cases blisters appear over 75% of the body inside and out.
Even the mildest form can transform simple tasks such as walking and typing into impossible ordeals. Open sores and blisters that heal slowly if at all characterize the most severe form of EB. This continuous blistering leads to scarring causing disfigurement and immobilization of fingers, toes, arms and/or legs. Blisters that form in the mouth, oesophagus, throat and stomach cause serious complications leading to secondary infection, anemia and malnutrition, general debilitation, cancer and premature death.
When I think of EB I think of the courage displayed by those who suffer from EB. I think of the pain and frustration, the shame, the guilt and the toll it takes on one's self-esteem and self-confidence. I think of the parents of children such as the Foreman family whose son Quinn was diagnosed when he was five weeks old. Approximately 70% of his body was covered in blisters.
Through Mrs. Foreman's letters I have come to understand how their lives were turned upside down. Due to the lack of awareness by both the public and the medical profession, the diagnosis for Quinn was very slow in coming. For nearly five months Quinn was fed through a syringe because his mouth and throat were completely covered with blisters, but this child's suffering did not end there. He lost all his fingernails and toenails.
It seemed as though every time Quinn was picked up by one of his parents, he received a new blister. From then on the only time his parents picked him up was to feed or change him.
Mrs. Foreman describes the hardest part of this ordeal was having to break the blisters and bandage him up as if he were a burn victim. This process took approximately two hours every day.
When I think of EB and EB sufferers, I think of the almost total lack of services and support offered to those who live with this disease every day. I think of the measures taken by parents seeking a miracle which often involves going to the United States or abroad, where governments have invested in research into this illness and have attempted to treat its symptoms with procedures such as apligraf.
The parents of these infants are provided with little information, if any at all, about the disease at birth. A diagnosis is rarely arrived at easily.
When I think of EB, I think of my constituent Kevin Campbell. Both Kevin and his sister inherited this disease. Kevin is a perfect example of the hidden potential and ability that people with EB possess. If it were not for Kevin's initiatives to raise awareness of EB for all Canadians who suffer from it, there may not be the Dystrophic Epidermolysis Bullosa Research Association, more commonly known as Debra Canada. And I would not have joined this fight to raise awareness of EB in the House of Commons.
Living with EB means being engaged in a never ending battle to educate. My question is for the Minister of Health. What steps are being taken by his department to encourage and facilitate research and development into the cure and treatment of Canadians suffering from EB?