DJ, model and epilepsy/cannabis activist Chelsea Leyland is on a mission to change the conversation around cannabis-based medicine.
Sixteen years ago, British-born DJ and model Chelsea Leyland was diagnosed with epilepsy. But two years ago, something changed: she weaned herself off her pharmaceutical epilepsy medication altogether and started using medical cannabis as an alternative. It instantly changed her life for the better. And now she wants it to do the same for others like her. Chelsea is on a mission to educate and inform people about the benefits she’s experienced from cannabis-derived cannabidiol (CBD) with hopes of making it a legal, viable option for those who can benefit from it most. And it starts with her story.
Getting diagnosed with epilepsy at 15 wasn’t easy. “That’s an age where you want to party and stay up all night and have fun and be carefree. But everything about my condition suggested that lifestyle was not going to work for me and that I would need to be responsible, to think about sleep and to take my medication every day,” says Chelsea. But she grappled with her Juvenile Myoclonic Epilepsy (JME) diagnosis for other reasons, ones that hit closer to home.
“I remember it being particularly hard to navigate the emotions surrounding my diagnosis because epilepsy had been such a big part of my life because of my sister and because she had such a severe form of epilepsy. Until then, I had been the ‘healthy child’. It was very hard to believe that I could have the same condition. I think it was especially challenging for my mother to know that both of her children were not well. So, I think a lot of me felt pain for my mom.”
After the diagnosis, Chelsea tried a lot of different medications but says, “Unfortunately the one that worked, Keppra, was very harsh on my body and came with a lot of debilitating side effects. So, on the one hand my seizures were reduced but my quality of life was not so great.” Back then, a natural remedy wasn’t something she or her doctors even thought about. “I was told I didn’t have a choice. Either risk falling down and severely hurting yourself or you take medication and you won’t have seizures. It was that black and white.”
So, for 14 years, Chelsea — who’s been dubbed “Fashion’s DJ” for the number of high-profile fashion industry events she’s played — juggled life with epilepsy, DJ- ing, and the hectic travel schedule and sleepless nights that came with it.
The first-time Chelsea heard about CBD was when someone sent her family the “Charlotte’s Web” video of a young girl who treated her seizures with CBD. “I just found it very hard to believe,” she said. “There’s so much misinformation that gets thrown around the internet and I just thought there’s no way a child could be having that amount of seizures and a bit of cannabis oil is reducing them by that much. One time my sister had 70 seizures in a night, so I think when you’ve experienced it to that degree, when you’ve lived through this condition, and seen your sister suffer, cannabis oil as a treatment wasn’t even a possibility for me.” Which is why her first experience with CBD was so profound. “It was honestly mind-blowing. It felt like a miracle.”
Chelsea was already sleep-deprived when she took the red-eye to London for a wedding. “I fly often but that one was really bad for me. I missed a night of sleep and that usually puts me in the danger zone for having a seizure. The night of the wedding, I think we went to bed at 9 or 10 a.m. — which is really quite dangerous for me.” But thanks to a few drops of CBD from a cannabis activist she knew, Chelsea was fine.
The true “ah-ha” moment didn’t come until a week later when she was back in New York. “Suddenly I remembered that on the night of the wedding, I didn’t have any feelings of an aura or a pre-seizure. Usually, when I stay up that late I start to feel, like, ‘Oh dear one is going to come on, I can feel it.’ But I think when one feels normal, you don’t think, ‘Oh, I feel normal’ so it wasn’t until a week later when I realized I hadn’t experienced any of those sensations. I was wondering if it was because of those few drops of cannabis oil, but I told myself that it was such a silly thought. And that ended that… until the second time I tried it.”
To fully understand Chelsea’s enthusiasm for medical cannabis, you must first understand what it’s like to live with epilepsy. Chelsea often uses Humpty Dumpty as an analogy when describing how she felt, even on medication, “It’s like in Humpty Dumpty when all the pieces are kind of everywhere.” But the second time she tried CBD, Chelsea says, “I knew very quickly that I felt different — and when I say different, it was like I felt more normal. It’s a hard thing to verbalize. It was like all the pieces of a puzzle in my brain were back together. I felt whole... I didn't feel like I had epilepsy. It felt correct.”
After that, someone she had been connected with brought her some CBD from LA for her to try and asked that she keep a journal as she used it. She recalls feeling less anxious and more grounded in her body. She was calmer and able to sleep at night. Six months after diving into the world of CBD, and weaning herself off her epilepsy medication, she was able to go off it completely (she now uses a 1:1 ratio of CBD and medical cannabis). And she hasn’t had a seizure since. Not one! “To be able to get off medication has been a dream for me. It’s something that I never even thought was a possibility.”
With her neurologist in the UK, where cannabis is still very much illegal, Chelsea found that she was self-medicating with CBD. “At the time, I didn’t have a physician that I could have an open conversation with about this, so I had to follow this trajectory solo.” Going at it alone is what made her want to advocate for medical cannabis, feeling that people deserved to know about the potential it offered fellow epilepsy patients. “I wanted to have an open and honest conversation around cannabis.”
It was this frustration that lead her to the director’s chair, where she’s co-directing and co-producing the documentary Separating the Strains. In it, they recount medical cannabis success stories, as well as covering the controversial epilepsy drug Epilim, which has caused women to give birth to children with severe birth defects. With equal parts frustration and sadness, Chelsea says, “Given the choice, these are women who may have been able to use medical cannabis as a form of treatment.”
Working on Separating the Strains, which is still in production, has been the thrill of a lifetime for Chelsea. “It’s been so incredible working with so many women. They’re all so talented and fantastic — and also so lovely with my sister. Our director Caroline Sharp has a background in neuroscience, which has been an incredible asset to the film.” Alongside Director/Producer Caroline Sharp and Producer Sophie Daniel, they’ve set out to tell thought-provoking stories, like that of sisters navigating two different types of epilepsy through two dissimilar treatment options. Says Chelsea, “You can see how different their lives might have been under other sets of regulations.” Through stories like these, this women-led team is hoping to educate people on medical cannabis and get people thinking for themselves.
Chelsea makes sure to point out that cannabis-derived treatment doesn’t work for all epilepsy patients. And their film isn’t an attack on pharmaceuticals, which are life-saving for some patients. However, she notes, “we’re at a unique position in time where people are able to make informed decisions with more research being published on the vast array of things cannabinoids can do.” Ultimately, they want people who see Separating the Strains to come out with a greater understanding of the science behind cannabinoids so they can feel informed and empowered as patients and have a say in their treatment options.
She may live in New York now, but it’s safe to say Chelsea’s heart is in England, where her sister still lives, in full-time care at The Epilepsy Society — and where medical cannabis has only just now been rescheduled (July 2018), with a long road ahead to having it readily available. When I ask her what the hardest part of this whole journey has been, she brings up her sister Tamsin. “Looking at my sister as someone who doesn’t have access to this medicine, and just thinking, ‘What if my sister had been taking cannabis oil from a younger age?’ Maybe she wouldn’t have suffered as much brain damage as she has.”
If it seems unfair that not everyone has been able to access the same relief that Chelsea has with medical cannabis, it’s because it is. But with her sister and the entire epilepsy community as her motivation, Chelsea is set on changing this. By bringing education, inspiration, and real change to the world.
You can follow Chelsea’s work on Separating the Strains, a female-made documentary about medicinal cannabis as treatment for epilepsy patients, out early next year, at @cbd4epilepsy and separatingthestrains.com. If you share Chelsea’s passion for cannabidiol as a natural alternative to epilepsy medications, please consider donating to the Separating the Strains Kickstarter campaign here.