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Patient Voices: Abby – “I’ve been masking with cannabis for most of my life”

After a recent diagnosis of ADHD and finding out she is autistic at the age of 32, Abby’s life is only just starting to make sense. 

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Abby Hughes (left) and Lucy Stafford

Abby Hughes has been self-medicating with cannabis since her teens, but after a recent diagnosis of ADHD and finding out she is autistic at the age of 32, her life is only just starting to make sense.

“At school all my teachers would say, ‘Abby does fantastic work, but she needs to stop being such a perfectionist’ – I always zone in on the little details, everything has to be uniform and colour-coded.

“I collect stones with holes in them and I spent my 21st birthday looking at train stations in Stockholm,” recalls Abby.

“I’ve always been a bit of a different cog in this weird little world and nobody realised.”

These little character traits are starting to make sense to Abby now, after she was diagnosed with ADHD this year aged 32 – and just a few weeks later found out she is autistic.

As a teenager she was diagnosed with depression and anxiety, prescribed medication and therapy to manage her symptoms, but now she is starting to look at her life through a different lens.  

“I was told I had anxiety and depression and found myself thrown into CBT therapies and taking various medications, but now I know it was actually undiagnosed ADHD,” she continues.

“I wasn’t a hyperactive little boy, so nobody saw it. We need to change perspectives on what these invisible conditions are and how they actually affect you.”

Attention deficit hyperactive disorder affects millions of children worldwide, but boys are more than twice as likely as girls to receive a diagnosis.

According to the Child Mind Institute, women tend to be older than men when diagnosed, partly because symptoms often present differently in them than in men and are less prevalent. 

Co-existing conditions, such as depression and anxiety can also cause complications which lead to a diagnosis being delayed.

Abby believes it is cannabis that has “helped her cope” for long, and may be the reason her symptoms were able to go under the radar.

“I’ve been using cannabis almost every day since the age of 14,” she says.

“It’s only now that I’m realising the extent that it has helped me to get on in the world. It has genuinely helped me cope at work and in social situations – some days I’m the life and soul of the party and others I’m just not in the mood for talking to anyone.”

She adds: “I’ve always relied on it, but I didn’t realise that it was my medication until a bit later. I’ve actually been masking for years and years using cannabis. I’m seeing it through this whole new lens.”

Growing up in Abby’s family, cannabis was known as “Nanny Carol’s herbal tea”. 

“My nan always used cannabis, we knew it wasn’t allowed, like alcohol or tobacco, but we had no idea it was an illicit drug – it was just my nan’s special ‘tea’. It was never in our faces, but it was never hidden from us either.

“I started using cannabis as a teenager after I was diagnosed with anxiety and depression and realised it was helping, but I didn’t have a routine or medicate properly, I just used it in social situations.”

But as she grew up and her health became more complex, cannabis began to provide physical relief too.

When Abby went to the doctors about the debilitating pain she experienced around her period – which could last for up to 10 weeks – she was told it was just “period pain” and given the implant to prevent them at just age 15.

“I didn’t want to tell my mum in case she thought it was for contraception,” she remembers.

When she was eventually diagnosed with endometriosis in 2012, she had the coil inserted, which she describes as the “worst thing that ever happened to her”.

“I had to have it out in a matter of weeks. Now I know I’ve got a tilted pelvis and I’m hyper-mobile, no one should have been rummaging around in there, but no one picked up on it for years.”

Doctors offered her drugs such as amitriptyline, gabapentinoids and fentanyl patches, but they failed to keep the pain under control and she continued to consume cannabis illicitly – even travelling to Amsterdam to find a strain which was supposed to be good for endometriosis.

By the time Abby was referred to a rheumatologist, more than a handful of people had told her symptoms sounded like Ehlers Danlos syndromes (EDS). 

She was diagnosed with fibromyalgia and hypermobility first, and then EDS at a specialist centre in London in 2017. 

EDS are a group of conditions which affect the connective tissue which provides support in skin, tendons, ligaments, blood vessels, internal organs and bones.

It can affect people in different ways and in all parts of the body –  for some, the condition is relatively mild, while for others their symptoms can be disabling.

Abby saw a gastroenterologist who found problems with her intestines, and a cardiology specialist who told her she had Postural tachycardia syndrome (PoTS) – which explained why she had been passing out for years and not knowing why.

Abby underwent major surgery in 2019.

“They basically saved me because they helped me understand what the hell was going on with my body,” she says..

“There were so many different things, but one thing all of my symptoms had in common was that they were helped by cannabis.”

At the time, Abby was working as an operations manager in the NHS in complex departments such as bariatric surgery, inherited metabolic diseases, neurology and at one point managing one of Europe’s largest bone cancer departments.

After dropping out of her creative media degree after one year, she says she got her job by “pure chance” aged 21 and went from a band three straight to management as she was good at “making im

provements in managing waiting lists.”

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“They took a chance on me, but I don’t know how I did it,” she says.

“At one point it was me and seven people running the largest bone cancer centre in Europe, reporting directly to the chief executive.

“I masked my way through the whole thing and ironically, I was off my face on drugs, opiates, the whole time.”

 Abby ended up having a breakdown and was made redundant from her role, while on the waiting list for major orthopaedic surgery, herself.

“I lost my whole career because I got sick and they couldn’t understand why,” she says.

In February 2019, she underwent the invasive procedure, which involved cutting into her hip socket in three places as well as her femur and having metal work implanted in her legs. 

Doctors warned her it would take her 10 times longer to recover due to her PoTS.

“By day three other people would be up and walking, so I was getting really frustrated,” she says. 

“I told the nurses and started taking a THC oil that my friend had made. The next day I didn’t only walk, but I walked up three stairs. The nurses let me keep using the oil because they could see how it was helping me.”

Losing her job meant she was finally able to be honest about her cannabis consumption. 

“I’d been doing a bit of advocacy around cannabis and I’d been carefully telling people in the NHS, asking them about the endocannabinoid system as though I didn’t know anything about it. I was finally able to come out and be a patient and be truthful about it. The law had changed but I still couldn’t afford to get a prescription.”

As of 2020, Abby now has a medical cannabis prescription, which she describes as a “life-changer”.

The same year, she helped launch PLEA (Patient-Led Engagement for Access) with a group of other patient advocates to challenge the inequalities in accessing cannabis medicines on the NHS.

“Now I’m prescribed it, I’m in an even better place. I was on Tramadol, amitriptyline, dihydrocodeine, diazepam dozens of different drugs. They have all been replaced with CBD oil, and two types of THC flower, and that is all I take.”

“It’s been a game-changer, I can get up in the mornings and be productive.”

A few weeks ago, she shared a video of her and friend and PLEA co-founder Lucy Stafford rollerblading three miles along the coast in Brighton.

“Having a continuous source of medication is what has enabled me to go out and rollerblade as part of my recovery, something I never would have imagined was possible.”

PLEA has celebrated a number of significant achievements since its launch exactly one year ago, including hosting the first ever Medical Cannabis Awareness Week in November 2020. 

The hub of the organisation, PLEA’s Patient Working Group gives patients a voice and ensures their experiences are at the centre of the UK sector as it develops.

“PLEA is completely independent and volunteer run, it is built by patients for patients, because we should be centred and amplified in this sector,” says Abby.

“There isn’t a day off for us, every day we get patients messaging us, academics wanting to speak to us, journalists getting in touch, which we are really grateful for, but it’s non-stop.

As chair and outreach director – alongside the many other hats she wears – including as a Project Twenty21 patient access consultant and a co-founder of Plant Ed Collective – it’s often taken for granted that Abby is a patient herself.

“People just see me rollerblade and think I’m fine, but I’m not. I can go rollerblading sometimes, but sometimes I need a stick to help me walk.

“I’m a patient too and it’s cannabis that has enabled me to do all this,” adds Abby.

“And I think having ADHD helps.”

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group.

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Read what medical cannabis means to EppieGillian, Margaret and Jonathan

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources

 

 

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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