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Purple Day

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Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.

via www.purpleday.org

 

50 million people worldwide have epilepsy

An estimated 1 in 100 people will develop epilepsy in their lifetime

Nearly 50% of people with epilepsy have uncontrolled seizures despite treatment

 

 

I had forgotten about Purple Day until a co-worker reminded me last week. I’ve been in the epilepsy world for nearly twenty-one years, thrust there one bleak June afternoon of 1995 in a New York City hospital. My baby daughter Sophie, not quite three months old, had just been diagnosed with infantile spasms, a particularly rare and devastating seizure disorder, and we were being admitted to the hospital to learn how to give her a powerful high-dose steroid called ACTH. I went from nursing a perfect baby in a fourth-story walk-up to thrusting a long hypodermic needle into an orange with a nurse in a bleak New York hospital. I was practicing for when I’d have to push it into my baby’s thigh. That drug didn’t stop the seizures, nor did the twenty that followed it, given in combinations of two and three, some approved for use by the FDA but most not, over the next nineteen years.

During those nineteen years, I would help to found PACE, a non-profit dedicated to finding a cure for epilepsy, help to raise millions of dollars for research, serve on the boards of several prominent epilepsy-related foundations, work as a parent expert on a national panel attempting to improve the lives of children with epilepsy and their families, help to gain a grant from a prominent film company to make a public service announcement for epilepsy awareness and go to countless benefits, galas and walks to promote awareness and raise money for cure.  I pulled on a purple tee-shirt each year for Purple Day and dressed my daughter in one, too.

Sophie continued to seize despite the drugs and the diets and the myriad alternative treatments. She would never learn to talk or use the bathroom or feed herself. She would suffer through falls that knocked out her teeth, split her head open, split her lip, broke a leg and a hand and her nose. Her two little brothers would learn how to help me ease her to the ground and protect her head while she seized, and as they grew stronger, lift her from the floor and carry her to her room to recover. Her father or I slept next to her for years, ensuring her safety. Our marriage failed. Yet Sophie grew to be a beautiful young woman, indomitable in her ability to recover from hundreds of seizures a day and vicious side effects of powerful anti-epileptics. She is at once a young woman of grace and integrity and completely dependent on her family and caregivers.

In late December of 2013, when Sophie was nineteen years old, we were one of the first families in California to get off the waiting list to get a bottle of Charlotte’s Web, a high CBD/low THC tincture. Within a week, my daughter had the first seizure free day of her life, and within three weeks she was working on as many days without seizures. Some would say it was a miracle, but I soon learned that it wasn’t, and that this treatment had been long suppressed by political forces and cultural biases. Two and a half years later, my daughter has been weaned from nearly 85% of the drugs that she was on when we first began giving her cannabis. She takes a combination of CBD and THC three times a day. She has more than 90% fewer seizures. She is easy in her body, sleeps well and smiles often.

After so many years of fighting and advocating, I have little energy to do anything but tell and write our story, over and over again. This is our story.

My daughter Sophie is one of the 50 million people on the planet to have epilepsy. She is one of the 50% of those 50 million whose seizures have been refractory to treatment. She finally responded to a tincture of whole plant cannabis medicine that we were fortunate enough to get access to despite draconian and unreasonable laws. It’s a travesty that others who are suffering from refractory epilepsy are at the mercy of these laws, that they must nearly beg to get access to cannabis to treat their children or themselves and that much of the neurology community holds cannabis to a far higher standard than the drugs that they’ve been prescribing for years.

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I’m putting on a purple tee-shirt tomorrow and helping to bring awareness about epilepsy. I’m wearing purple to support people living well with epilepsy and for those that are living the hell that is epilepsy.

I’m putting on a purple tee-shirt tomorrow to increase awareness of epilepsy and cannabis medicine as a treatment for it, not as miracle but as observable fact.

I’m putting purple on Sophie, too, and demanding that people sit up and take notice of her and the life she has been given back.

She’ll wear purple for the people like her because she is legion.

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