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Epileptic sisters fight for medical cannabis equality

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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.

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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.

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“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.

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“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

Advocacy

Emigration: “I tried cannabis again and I noticed that I was in less pain when I took it.”

In a new series, we speak to Irish cannabis patients about their decision to emigrate in search of easier, safer cannabis access.

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Emigration: A stack of suitcases against a window revealing a sunset and a plane

In a new series, Cannabis Health News talks to people who have experienced emigration in search of safe, legal cannabis access.

Our previous stories have focused on the difficulty of packing your entire life into boxes and emigrating with your family to a new country for access. However, there is another side to emigration: the potential for return.

What happens once you are a medical cannabis patient in another country and need to travel home?

The returning Irish from emigration in the past few years has hit record numbers. As people settle into life away from home, it gets harder to return. Travel options have never been easier with several flights to and from Ireland daily from all over the country, ferry options and failing that, zoom calls are a vast improvement on Skype.

COVID lockdowns meant that it’s been a difficult year for travel. Families who have experienced emigration may not have seen in their families since the beginning of the crisis. Now thanks to vaccines, travel is starting to become a possibility again.

This leaves medical cannabis patients in a confusing situation. What do you do if you have a prescription in one country yet need to go to another?

Joe’s story

This is the situation *Joe is in. This is not his real name but he has asked to remain anonymous due to the persisting negative attitudes towards cannabis which he is prescribed for debilitating arthritis.

“I have since the age of 14 suffered from debilitating rheumatoid arthritis. I also suffer from sciatica. I played rugby six days a week for my school, worked on the family farm and lived a full and normal life. My body then changed and while initially my shoulders were affected but then my knees. It felt like someone was trying to tear my arms from their sockets and that I had broken glass in my knees. That was 36 years ago.”

Arthritis is a common condition that causes pain and inflammation in a person’s joints. Osteoarthritis and rheumatoid arthritis are the two most common forms of the condition. It can start when a person is between 40 and 50 years old although it also affects children and teenagers.

In rheumatoid arthritis, the body’s immune system targets affected joints causing pain and swelling. The outer covering of the joint is the first place to be affected before it spreads across the joint leading to further swelling and a change in shape. This may cause the bone and cartilage to break down. People with rheumatoid arthritis may also develop problems with other tissues and organs.

The Irish Children’s Arthritis Network (iCAN) estimates there are over one thousand children and teenagers currently diagnosed with juvenile arthritis.

Emigration return

Emigration in Ireland soared in the 1980s as a result of a harsh recession and lack of jobs. It is estimated that during the ten years of the 1980s, 206,000 more people left Ireland.  Like a lot of Irish teenagers unable to find work and looking to leave home, Joe decided to leave Ireland for the UK. While working on a building site, he encountered other workers using cannabis.

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“Although I had my condition to contend with it, my symptoms were at their worst in autumn and winter and I went to the UK in the summer to work on building sites (I had no idea my short visit would last 33 years and counting.”

“I was brought up in Ireland with typical conservative social values. Many fellow workers on site were smoking cannabis but I had no interest and indeed felt it was both inherently morally wrong as well as being illegal.”

“For months my fellow workers would say to try some. I relented when we were out together one night as I had a few drinks so my guard was down. I smoked some cannabis. I was violently ill. I did not know that smoking cannabis with drink would have such an immediate and obvious effect.”

Emigration: A red Irish passport sitting on a black bag

Emigration, cannabis and pain

Joe began to feel more pain as winter began and his joints reacted to the cold. Despite his illness the first time, he tried cannabis again and noticed an effect on his pain levels. His quality of life began to improve and he started to make positive changes.

“I tried cannabis again a few weeks later and by this time the winter was in full flow and my bones were aching. I noticed that I was in less pain when I took it. I prayed for guidance on the issue and felt it was not a sin for me to use cannabis because it was helping to alleviate my symptoms.”

“I then started to use cannabis more frequently. When I reached 19, I no longer needed to take my prescription and I was able to cancel an appointment for injections. As my condition had relented I was able to reengage with my passion for sport and would swim a mile per day, cycle to and from work and work as a scaffolder during the day.”

“I studied A levels at night school. I returned to studies as I felt if my condition worsened I would not be able to engage in physical labour and I also had a calling to be a lawyer. Anyone who has handled scaffolding tube on a cold winters day will also understand why I felt a move indoors could be a welcome change.”

Joe did well enough in his A levels to gain a place to study law at university. He qualified as a solicitor and worked at one of the top regional practices in the country. He had the honour of meeting Irish President Mary McAleese on one of her trips to Manchester. He credits being able to live such a full life to the benefits of cannabis.

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Breaking the law

However, he was starting to worry about what could happen if his use was to become public knowledge. Especially as someone working in law.

“Cannabis had managed my condition so effectively that I was able to play football for the corporate team and had no outwards signs which could not be dismissed as being down to simple stiffness. I was concerned however that should my use of cannabis become public knowledge my career would be brought to an abrupt end.

“I was leading a double life – cannabis at the time was dismissed as having no medical use and I was afraid no-one would believe me if I said I was taking it for my arthritis.”

Joe stopped using cannabis for three years as he became fed up with breaking the law. He had also noticed attempts to change the law in regards to medical cannabis and wanted to see if he could access it legally. But his symptoms flared up as a result of him stopping his treatment.

“During my cannabis break however my arthritis flared up with a vengeance. Although now prescribed methotrexate, sulfasalazine and naproxen. During my near 30 year use of cannabis prior to this point, I needed no other drugs. Significant bone erosion occurred in this 3 year period.”

“My hands and feet were badly affected and I was unable to form a fist with either hand for about 2 years. I had to stop playing classic guitar. In addition to studying law, I also studied music and played guitar in ensembles and gave performances with others in my spare time so losing the ability to play was quite hard to take”

Joe was delighted when his prescription for cannabis was approved. After taking it for about a year, he found his condition far more under control and began to come off some of the drugs he had been prescribed. He was also able to play the guitar again.

One of the biggest things, he notes, is the feeling of being able to access his medication responsibly and not break the law.

“Cannabis, for me, does have limitations. Once I take it, I won’t drive for the rest of the day. It can give me mood swings although nothing too extreme. I can be grumpier in the mornings. I am mindful that all drugs have their side effect. I am losing my hair due to methotrexate which gives me a number of bladder issues as well as nausea.”

Emigration: two hands packing a suitcase with clothes ready to travel

Emigration and settling

Although Joe is happily settled in the UK with no plans to move home, he still has family in Ireland who he would like to visit. This presents him with an issue, how to pack his prescription?

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Going without cannabis while abroad can result in a lot of pain as Joe discovered when he stopped taking it. However, bringing it with him can result in having to again break the law. The other alternative is accessing the black market which is not safe for patients.

“My elderly parents live in Ireland and I would love to visit them. Ireland’s policy on drugs is different to that of the UK. There is nothing unusual about this as individuals states have their own laws. The UN passed the psychoactive Substances Convention in 1971. The Convention enables international travellers to bring their medication with them to other jurisdictions, even though they have different drug policies. Ireland is a signatory to this convention. The Irish State also supplies details of who to write to seek prior approval for the carriage of controlled drugs.”

Seeking approval

Joe has started an email and letter campaign of writing for help. He is not the only Irish person in the UK who has experienced emigration and wants to travel home. He encourages others to get involved.

“I have on many occasions asked both the relevant Secretary for Health and the Minister for Health for permission to travel to Ireland with my cannabis prescription and for clarification of Ireland’s drug policy for tourists and have pointed out the large numbers of people who could be affected. It’s not just persons prescribed cannabis if Customs is going to seize all controlled drugs.”

“Although nearly 6 months have passed, I am yet to receive either a formal approval or rejection of my request to travel home. In the meantime, my parents are of course getting older as indeed am I.”

There are also other concerns about using cannabis medicine while in another country besides emigrating.

Joe cautions: “To anyone who is thinking of just leaving their cannabis medication at home in the UK and then driving in Ireland, please bear in mind that in addition to dealing with withdrawal symptoms you may also fail a roadside drugs test.”

“It’s not at all clear that you will have a medical defence to a drug driving charge in Ireland. Thus if you want to travel lawfully with a car, consider not taking your cannabis prescription for sufficient time to pass a drug driving test, but obviously, this is impractical for sick people who are only granted a prescription for cannabis where other medicines haven’t worked.”

Joe advises that those thinking of travelling to Ireland with their prescriptions for CBMP should seek approval for their medication. This can be done by writing to the Controlled Drugs Unit in Dublin.

Catch up on part two: Adrienne’s story in our series on medical cannabis and emigration.

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CBD and gaming: Could CBD help you level up?

When it comes to gaming, could CBD give you a competitive edge? Always Pure Organics’ Sally Dempster explores the benefits.

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Always pure organics

Always Pure Organics’ Sally Dempster explores the CBD trend within gaming.

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Gaming Community

The gaming community is growing exponentially, from people playing casually with friends to professional esports competitors, all of whom are contributing to the phenomenal 1.8 billion (US) dollar industry. Especially with the lockdown conditions of Covid-19, the gaming industry has seen a huge surge in revenue and time spent video gaming- increasing by double digits in all regions. The increased amount of time spent gaming can sometimes lead to health problems; frequent players often report physical aches and pains, altered sleep cycles, stress and anxiety. Many of these health problems can be caused by the prolonged periods of time spent at a console or in front of a screen.

Physical aches and pains from gaming can manifest themselves in a variety of forms including carpal tunnel syndrome, gamer’s thumb, and tennis elbow. Avid gamers can sometimes fall prone to these problems which cause inflamed muscles, nerves, or tendons due to overuse.

Whilst cannabidiol (CBD) cannot cure the underlying damage caused by carpal tunnel syndrome, gamer’s thumb or tennis elbow, it may help to reduce overall swelling and it has been shown in studies to relieve inflammation. Research on CBD has also shown that the Cannabis sativa extract may, in some cases, be beneficial as a method of pain relief. Using CBD as a form of pain management could help to relieve pain from gaming conditions, enabling players to be more stress-free and relaxed throughout the natural healing process. It is important to note that using CBD as a method of pain management for acute pain will not result in instant healing; users should be aware that any decrease in pain does not equate to a fully healed injury.

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Gaming: Two men holding gaming devices playing a football game on the Tv

Read more: How medical cannabis could help with rare skin conditions

Gaming and scientific debates

There are ongoing scientific debates as to whether video games induce stress or whether they help to manage and reduce it. The answer to this debate perhaps depends on the level of investment that the player has in the game. Players who spend less time gaming or who only play for recreational and social purposes, for example, are less likely to get stressed during play compared to high stakes players or career gamers.

Evidence points towards CBD having a calming effect on the central nervous system. Taking CBD before gaming may help pre-emptively mitigate stressful feelings, this is due to the fact that CBD is a neurotransmitter that will bind to receptors in the brain. These bindings displace any anxiety-inducing neurotransmitters and stop them from binding to the receptor, which helps to restore equilibrium in the brain.

A recent study determined that video games do affect the stress system, in addition to the cognitive system of humans depending on the game style. Fear inciting games, which feature genres such as, survival, action, and psychological horror is more prone to elicit feelings of stress and tension. The research also demonstrated that the type and level of stress triggered in the players depend on the game style (Aliyari et al., 2021).

Esport competitions have closely monitored regulations regarding doping. Competitions adhere to the World Anti-Doping Agency (WADA) list of prohibited substances; players found breaking these regulations could find themselves (and their teammates) banned from competing. Cannabidiol is the only cannabinoid compound found in cannabis permitted in esport competitions.

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Although WADA has removed CBD from its list of prohibited substances it is still advised that competitors using the extract choose CBD products carefully as some broad-spectrum products contain low levels of THC which is still a banned substance in esports competitions.

As the number of gamers increases and the industry grows, player gaming injuries will become more prevalent; extracts such as CBD may prove useful in mitigating these issues. Cannabidiol could, in some cases, also aid with the reduction of stress created when playing video games. Especially at high levels of competitive esports, there is an intense amount of pressure on the players to perform; now that WADA has approved CBD for use in competitions it may be able to minimise players’ feelings of stress and anxiety while gaming.

Read more: When should you consider medical cannabis?

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CBD may reduce side effects associated with anti-seizure medications.

Could CBD help with the side effects of anti-seizure medications for people with epilepsy?

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Anti seizure medication: A brown pill bottle on its side with white pills spilling out against a blue background

A study published in the journal, Epilepsy and Behaviour examined CBD’s potential impact on anti-seizure medications for people with epilepsy.

There are 600,0000 people living with Epilepsy in the UK. It’s one of the most common nervous system disorders affecting people of all ages. It’s a neurological condition that can result in seizures. Treatment for epilepsy can include anti-seizure medication, diet therapy such as the ketogenic diet and surgery.

The side effects of medication can include dizziness, nausea, headaches, fatigue, vertigo and blurred vision.

There are medications such as Epidolex prescribed for rare seizure disorders such as Dravet syndrome or Lennox-Gastaut syndrome. However, it is not approved for other forms of epilepsy. There are around 60 different types of seizures and it is possible to have more than one type. Seizures can vary depending on where in the brain they are happening.

The study

Researchers at John Hopkins Medicine in collaboration with the Realm of Caring Foundation and other institutions conducted the observational study.

They analysed data collected between April 2016 and July 2020 from 418 patients. The participants included 71 adults with epilepsy who used artisanal CBD products for medicinal purposes and 209 who were caregivers of children or adults who also used artisanal CBD. The control group of 29 adults with epilepsy who were considering CBD and 109 caregivers who were interested in it for dependent children or adults.

Participants were asked to fill in a survey and answer questions about their quality of life, anxiety, depression and sleep. They were also given follow up surveys every three months for over a year.

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Read more: Can CBD help me sleep?

Anti seizure medication: A golden bottle of oil against a green background with a dropper dripping oil into the bottle.

The results

In comparison with the control group, artisanal CBD users reported 13 percent lower epilepsy medication-related adverse effects. They also had 21 percent greater psychological health satisfaction at the beginning of the study.

Their anxiety was recorded as being 19 percent lower and depression was 17 percent. Both the adult and youth groups reported better quality sleep than the control group.

The caregivers of patients currently using CBD reported 13 percent less stress and burden in comparison with the control group. Patients in the control group who started using artisanal CBD reported improvements in their physical and psychological health. They also self-recorded reductions in anxiety and depression.

Reactions

Participants were asked to record possible adverse effects related to their CBD use. Among all of the participants, 79 percent did not report any effects.

Of the remaining participants, 11 percent reported potential drowsiness, 4 percent said their symptoms may have gotten worse, 3 percent had concerns about the legality and 4 percent worried about the cost of the profits.

The researchers reported that further research is needed to understand how the findings could be applied to patients. They also stated that patients should consult with their doctor before trying CBD products.

Read more: When should you consider medical cannabis?

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