March 26 is officially Purple Day in Canada. Founded by Cassidy Megan of Nova Scotia, it is a day to wear purple to increase epilepsy awareness in Canada, around the world, and in homes like ours where our son Conor, like many with autism disorder and intellectual disability, also suffers from epileptic seizures. Given the substantially greater numbers of persons with autism, particularly when they also suffer from intellectual disability who suffer from epilepsy, autism awareness and epilepsy awareness events should make the high percentage of "co-morbidity" between autism and epilepsy known to persons and their families who suffer from either condition.
This co-morbiditiy is particularly more important because of studies and reports showing that persons with autism, intellectual disability and epilepsy die on average 30 years sooner than persons in the general population as made known in the UK Autism charity Autistica report .Personal tragedies, public crisis:
Epilepsy in autism
Between 20% and 40% of autistic people also have
epilepsy and this rate increases steadily with age – in
contrast to a one percent prevalence rate in the general
population. 10 In the typical population, the risk of epilepsy
is greatest in a child’s first year, decreasing in risk through
childhood, then remaining stable and not increasing again
until old age. 11,12,13 In the majority of autistic people who
develop epilepsy, their seizures do not appear until their
teenage years, much later than average.5,14 This suggests
that the underlying triggers of epilepsy may be different
in autism.
Autistic adults who also have a learning (Intellectual) disability have been
found to be almost 40 times more likely to die from a
neurological disorder relative to the general population –
with the leading cause being epilepsy.3
Despite the very
high prevalence of seizures in autistic people and the high
death rate from epilepsy, there has been virtually no
research to establish whether treatments used for epilepsy
are safe or effective in the autistic population. More
research is urgently needed into the relationship between
epilepsy and autism and the impact of epilepsy over the
lifespan in autistic adults.
Our son Conor had suffered from absence seizures that we were awae of for several years. In 2013-2014 he suffered 2 tonic-clonic seizures, formerly known as grand mal seizures which scared the heck out of me; alone at home with him at the time. He also suffered a major adverse reaction (hospitalized for 2 weeks, including 6 days in the Intensive Care Unit) to his seizure medication at that time, (Lamotrogine), which is reported to be highly effective for most who take it to control and prevent seizures. As has been reported by SFARI (Simon's Foundation Autism Research Initiative) teens like Conor at the time (now 22), with autism and intellectual disability, are at increased risk of epileptic seizure:
"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent.
The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."
NOTE: Epilepsy Canada's web site has important facts and information about epilepsy including types of seizures, diagnosis and treatment, and generally how to cope with seizures.
March 26 is officially recognized across Canada as Purple Day thanks to the 2012 Purple Day Act:
Purple Day Act
S.C. 2012, c. 13
Assented to 2012-06-28
S.C. 2012, c. 13
Assented to 2012-06-28
An Act respecting a day to increase public awareness about epilepsy
SUMMARY
This enactment designates the 26th day of March in each and every year as “Purple Day”.
Preamble
Whereas the Parliament of Canada wishes to assist in efforts to educate and increase awareness, among members of the public, about people living with epilepsy;
Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:
Short title
1. This Act may be cited as the Purple Day Act.
PURPLE DAY
Purple Day
2. Throughout Canada, in each and every year, the 26th day of March is to be known as “Purple Day”.
Wearing purple
3. On the 26th day of March, people are encouraged to wear the colour purple to indicate their support for people with epilepsy and to increase public awareness of this disorder.
Not a legal holiday
4. For greater certainty, Purple Day is not a legal holiday or a non-juridical day.
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