Siblings Chelsea and Tamsin Leyland both have epilepsy, but only one of them has access to life-changing medical cannabis. DJ and activist Chelsea, tells Sarah Sinclair about the fight to save her sister.
Chelsea Leyland had always been the ‘healthy’ sibling.
Growing up she saw her elder sister Tamsin rushed in and out of intensive care, having been diagnosed with intractable epilepsy as a baby.
The condition had already been a part of Chelsea’s life for as long as she could remember, when she started displaying symptoms herself aged 14.
“At the time no one knew them to be symptoms,” says Chelsea over Zoom, from her home in New York.
“I noticed when I was in the car and the light would come through the trees and flicker on my eyelids that I would get a strange sensation in my head, and I started to have what I now know are myoclonic jerks in the morning.
“They would happen more frequently when I was tired and on school days where I was feeling a little bit more stressed.”
The symptoms worsened and at the age of 15, Chelsea was diagnosed with juvenile myoclonic epilepsy (JPE). She and Tamsin both carry a mutation in the CPA6 gene, often identified in certain forms of epilepsy.
“I was always the cognitively healthy sibling, so it was a real shock for me and my family, because we had been on this emotional roller coaster with my sister,” she says.
“To go through life believing there is nothing wrong with you, to then find out that you have this horrific condition that you’ve seen your sibling suffer with was very challenging.”
She was put on a number of anticonvulsant drugs, but although they did improve her condition the side effects were debilitating. Throughout her late teens and 20s, she experienced insomnia, extreme depression, anxiety and hyperactivity. She describes it as living in ‘fight or flight mode’.
“My nervous system was a complete mess,” Chelsea says.
But on the outside, she was carving a successful career as a DJ and model. She had moved to New York and was becoming well-known in the fashion crowd, with friends in high places and a huge following on social media.
Chelsea was at the Glamour Awards, listening to women give empowering speeches about their philanthropic work, when realised she wanted to use her platform for something positive.
There was never any doubt about what that would be.
“I had been working in what felt like quite a superficial world for some time,” she says.
“I remember hearing all of these incredible female speakers who were committing their life to being of service. I went home that night and thought I have to use my platform for something good and what else to feel drawn to, but epilepsy?”
She continues: “There’s a stigma about epilepsy and the way I was brought up was to keep it ‘hush hush’.
“I was in the fashion world and there were ways I could bring a different colour to the conversation, so it wasn’t just doom and gloom, which was how it felt when I was growing up.”
And so she turned her Instagram account – which now has more than 61K followers – into a platform for her activism.
“I didn’t have a million followers, but I did have a platform and a voice, and that could be powerful,” she adds.
Chelsea discovered cannabinoids around four years ago (medical cannabis was legalised in New York in 2016), through Sanjay Gupta’s famous CNN film about Charlotte Figi and how CBD was treating her intractable epilepsy.
“It was mind-blowing to watch,” she says.
“I had seen my sister having daily seizures for so long that it was hard to comprehend that a little bit of plant oil could be an efficacious form of treatment.”
But when she tried CBD through a friend and cannabis activist, she noticed its effects instantly. After six months of using cannabis, against her doctor’s and family’s wishes, she weaned herself off all of her pharmaceutical drugs.
She uses a full spectrum cannabis oil, containing one to one ratio of THC and CBD, and now has been seizure free for three and a half years. She has even reached the point where she is able to take the occasional day off from medication completely.
“To say cannabis has kind of transformed my life is an understatement,” says Chelsea.
“It was already such an incredible gift that I was able to wean off pharmaceuticals, but now to get to a point where my body is in such balance that I’m able to miss a day is quite remarkable.
“It’s quite painful to imagine what life would be like without it. I still struggle everyday living with this condition, even though I’m not having seizures, there are so many other elements of epilepsy that one has to battle with daily.”
She adds: “I felt like I couldn’t cope when I was on the medication, but cannabis allows me to feel like everything is going to be okay in those moments.
“It doesn’t just treat my seizures, it also helps my sleep, stress, digestion, anxiety, it’s a very dynamic medicine. My life would not be in such a good place without it.”
This is a truth that, sadly, Chelsea and her family know too well.
Her sister Tamsin, now 37 and living in an NHS facility for people with severe epilepsy in the UK, does not have access to this life-changing medication, despite it being legalised in 2018.
Clinicians believe there is a good chance that medical cannabis would improve Tamsin’s quality of life, as she and Chelsea share the same genetic mutation. But until doctors are able to prescribe it on the NHS, she will never know.
“It’s hard to articulate how unbelievably frustrating it is,” says Chelsea.
“It’s absurd that we are in this position where vulnerable patients like my sister – who we are struggling to keep alive – can’t access a plant extract, which could potentially be a life-saving form of treatment, due to her geographical postcode.
“Tamsin has severe brain damage from having seizures since she was a baby, we’re not looking for a miracle as a family. We’re just looking for some relief, and potentially a better quality of life.”
Chelsea’s activism has naturally transitioned into medical cannabis advocacy. For the last two years she has been working on the documentary, Sisters Interrupted, which began life as an exploration of the medical cannabis space but ended up an intimate tale about two sisters and what it looks like when one is prevented from having the medicine she needs.
“Even though Tamsin is five years older than me, there was a time where I mentally outgrew her, so she almost feels like a little sister,” Chelsea says.
“As she is living in the body of an adult there’s less concern, but we need to remember that these patients are someone’s mother, someone’s father, someone’s daughter, someone’s sibling.
“It shouldn’t matter how old they are, we still want to keep them alive.”
Having started work on the documentary before the UK law change, Chelsea says it was a ‘big moment’, but ended up leaving her feeling ‘defeated’ and ‘disheartened’.
“We were celebrating that day, we really believed that our hard work and the work of all of the advocates who had come before us, had paid off – but it ended up being anticlimactic,” she says.
“I’m a fighter by nature, so it fuelled the fire and we realised this was going to be a much bigger fight than we thought.”
Chelsea might be a fighter, but she is also a realist and after more than three decades of watching her sister suffer, she admits that the fight is exhausting.
“Am I losing steam? Honestly, some days it feels like I am and I wish I could say otherwise, she admits.
“But I am still fighting and just hope that it will happen in my sister’s lifetime.”
She adds: “In an ideal world, the outcome of the film would mean access for my sister, and of course on a wider scale, that everybody that could benefit from cannabis has access to a safe, standardised product.
“But even if we can’t change policies, at the very least I hope that my sister and I sharing our story will touch the lives of other people and help anyone struggling with this condition feel that they’re not alone.”
Sisters Interrupted is due to be released soon. Follow @cbd4epilepsydoc on Twitter for updates and visit www.separatingthestrains.com
Follow Chelsea @chelsealeyland
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