Dear Honorable Members of the Pennsylvania General Assembly,
On March 15, 2014 another young epilepsy warrior was taken from this earth too soon. Only days after receiving a standing ovation in The Utah House of Representatives, Charlee Nelson died. She was only 6 years old. Her family was fighting to change the Utah state laws to allow Charlee access to a safe, natural medicine to treat her debilitating and life-threatening seizures. The bill was passed in the House. Charlee’s Law came too late for Charlee. She is an Epilepsy Angel now.
I am crushed. I can’t stop crying. It’s just not fair. She was just a baby girl. Seizures don’t care. Anybody can have a seizure at any time. All you need is a brain. One in ten Americans will experience a seizure in their lifetime. Today cannabidiol (CBD) oils are offering an alternative treatment for those of us who don’t have seizure control. 30% of epileptics have uncontrolled seizures. We live in the danger zone; everyday could be our last. Seizures kill over 50,000 Americans every year.
We are given dozens of pharmaceuticals. Why can’t we just try this natural substance that is working miracles in Colorado right now. Why I say miracles, I truly mean it. Thousands of seizures are being prevented. Why can’t we all try it? Over 20 states allow medicinal cannabis. Pennsylvania must join the movement. Please support The Raymond Shafer Compassionate Use Act: Senate Bill 1182 and House Bill 1181. Please send it to the floor for a vote immediately. 85% of Pennsylvanians support medicinal cannabis. I have Intractable Temporal Lobe Epilepsy. I only want to have less seizures and more time with my family.
I didn’t want to speak out before. I was afraid. I didn’t want people to know what I thought about cannabis. Until I heard about Charlotte Figi in Colorado. I can’t hold back now. I want what she’s having. I should be allowed to have a safe treatment option other than surgery. I don’t want surgery. People are dying. Charlee Nelson’s family fought to change the law in Utah. It cost her life. Charlotte Figi was allowed treatment in Colorado and it saved her life. Would Charlee be alive if she lived in the next state over? Do you want to answer that question?
Right now there are families moving to Colorado to get CBD oil. They are medical refugees. Refugees are people who leave their home for one terrible reason or another. Leaving to get medical treatment is a terrible reason. We should not have to leave. Our lives are at stake. Charlee is dead. It’s too late for her. But it’s not too late for the more than 3 millions Americans living with epilepsy. There are days when I go to bed fearing that I won’t wake up. After a bad seizure, I am at risk for everything terrible. I can’t do anything else but worry and take my meds. Why can’t I try a plant?
Dr. Sanjay Gupta has “Doubled down” on his claims that cannabidiol is an effective treatment for seizure control. Please, let me try. I’m a disabled adult, I want options. My doctor and I are out of options. We are at an impasse. As long as my meds are working “good enough” there’s no options. I’m not down for surgery, I don’t have tumors that could be removed. My brain is just prone to electrical storms. Please give me anything that will slow that down. CBD is that. It’s real. It’s safe. I need it. All epileptics need it. Don’t let more children like Charlee die. It’s unfair that medical science is being overlooked and held back. Cannabis has been used to treat seizures for hundreds of years. I could reference ancient medical texts. This isn’t new science.
I am tired of waiting and having seizures. I have several seizures this week. I’m not sure how many. I didn’t have convulsions so that’s always good. My brain is hazy from too much electricity. I’ve been crying for Charlee and her family and for all of us who are suffering from seizures.
I just don’t understand why we have not made this a priority before now. It’s the 21st century, let us give up propaganda and accept science. CBD can offer seizure control. There are millions of us waiting and seizing in the meanwhile. If you don’t know the seriousness of a seizure, good for you. I don’t wish seizures upon anyone. I don’t anyone to see my seizures. Although I often wish that I could go and have seizures in front of legislators. Maybe they would believe me if they could see it.
I asked my husband how he knew I had a seizure this past week. He rolled his eyes at me, of course he knew. He knows the terrible sound of my seizure scream. What I meant to ask was, tell me what happened. I don’t remember anything. I never do. Which is why I can’t drive. Losing time is dangerous, it only takes one second of inattention to cause an accident. I fear accidents involving water; bathtubs, pots of boiling water, swimming pools. I don’t do any of those things by myself. It’s a pain. Epileptics die in water all the time. I don’t want to. Of course, tragic accidents are not my only phobias.
I could stop breathing. Who knows what my body might do during a full blown convulsive seizure. I throw up after seizures routinely. Sometimes that my only clue. Some day last week I threw up in the morning, unexpected and suddenly. It felt suspicious. Then I had the seizure my husband observed. I didn’t know about it, he had to tell me. We were both happy that I just zoned out and twitched and screamed and didn’t fall down. I am so afraid of falling down, I can’t even explain it. I don’t want my family to find me at the bottom of the stairs. I don’t climb ladders. I don’t use step stools. I am a “Fall Risk.” The hospitals always remind me in bright red bands when I am an inpatient. It’s a very serious disease for me and 3 million Americans.
Now is the time to move on The Raymond Shafer Compassionate Care Act . We cannot wait. Epileptics are dying at an average of one every 3 days. Please consider the thousands of Pennsylvanians who need this today. Please. I beg you to allow us access to a safe, natural medicine that can treat seizures. There is money to be made and lives to be saved. I don’t say that lightly. You could save my life today. Please, not another moment lost to seizures.
Kathryn Slagle, Pennsylvanian Voter and Epileptic