Canada will join with about 40 other countries on February 29 to mark Rare Disease Day for 2012.
Durahane Wong-Rieger, the president of the Canadian Organization for Rare Disorders (CORD), said that it’s very important that we set aside a day each year to remind everyone that there are Canadians who are victims of rare diseases.
Wong-Rieger said that the day raises awareness of rare diseases for all Canadians and especially among our politicians.
She said that it’s extremely vital that our federal politicians realize that we need to have regulations and legislation in place to support the treatment of and therapies for rare diseases, procedures that can be very expensive for most people.
CORD also wants to have both federal and provincial governments to support research grants to universities and various clinics to carry out research on possible cures for rare diseases.
Wong-Rieger said that CORD has seen some attitude changes in government concerning Rare Diseases since the organization starting taking part in Rare Disease Day events five years ago.
From having to explain to MPs what a rare disease is back in 2007, Canada has proposed legislation in place that may see this country having a Rare Disease Policy by the end of this year. Right now Canada is the only developed country in the world lacking a Federal Healthcare Policy that addresses treatments and therapies for people suffering from rare diseases.
While there is no official definition of a rare disease in Canada, the general understandtading is that it’s a disease that affects fewer than one in 2,000 persons. Some rare diseases such as Cystic Fibrosis and Muscular Dystrophy are documented more than others. Some of those diseases are very rare such as Batten Disease that affects a very small number of Canadians. On average, it is believed that approximately one in 12 Canadians suffer from one of over 7,000 rare diseases.
One very rare disease in the Coast of Bays is Batten disease.
According to the National Institute of neurological Disorders and Stroke, Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of five and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures.
In some cases the early signs are subtle, taking the form of personality or behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.
Eventually children with Batten disease become blind and bedridden. Batten disease is often fatal by the late teens or twenties.