2020 is the year coronavirus changed the world as we knew it, but some families were already living through their own pandemics, Ilmarie Braun tells Sarah Sinclair.
When Covid hit the UK earlier this year, someone asked Ilmarie Braun if she was scared.
“I’ve been scared every day since Eddie got his diagnosis,” she says.
“The reality of him living with intractable epilepsy is that his condition is life limiting, we don’t know how many years we are going to get together.”
Eddie, her five-year-old son has a condition known as infantile spasms, or West syndrome, and has been having seizures since he was seven months old.
As the country went into lockdown, and people’s lives were disrupted by not being able to travel, or go to the pub, Ilmarie couldn’t help but compare it to her and her husband Alex’s realisation that their lives would never be the same again.
“We’ve been living in a type of lockdown already,” she continues.
“It’s funny when people say things like I can’t travel. That was something we went through when we realised we would never be able to take Eddie on a longhaul flight – what if he had a seizure mid-air?”
Eddie’s condition is known as ‘neurologically catastrophic’ and the quicker the seizures are brought under control the better the outcome for the child. For the next few months of his life he was treated with strong medication to try and stop them.
“Within quite a short space of time he was on a cocktail of strong drugs and he was just a zombie – either asleep, or awake and having seizures – he stopped smiling and interacting,” says Ilmarie.
“With each new drug you hope that this will be the one that works. Nobody tells you that if the first two antiepileptic drugs don’t work the likelihood of any others working is really low.”
Brain surgery wasn’t an option as Eddie had pre-existing damage to his brain and although he took part in a clinical trial for the ketogenic diet it proved ineffective at managing his seizures.
“Unfortunately, with Eddie we never gained control no matter what we tried,” says Ilamrie.
“We were just surviving and life was pretty crap to be honest, for Eddie and for us as his family.”
When Ilmarie’s sister sent her an article she had read about medical cannabis, at first she was offended.
“I had preconceptions that cannabis is recreational and I was quite offended that anyone would think that is something we would do,” she admits.
“But actually, when you watch your baby having seizure after seizure and nothing is working, you do have to start thinking differently.”
At the time full extract cannabis, containing THC was still illegal, so they bought a CBD oil called Hayley’s Hope from America. Eddie’s pediatrician wouldn’t prescribe it, but he supported the family to wean Eddie off his other medication when his condition started to improve and kept detailed notes in his medical records.
“One by one, we slowly weaned him off everything and Eddie came back to us,” says Ilmarie
“He’s profoundly disabled physically but he’s such a happy little boy. He has got his own personality and he’s here now whereas for a long time, he was just existing.”
But Eddie’s condition is known to progress with age and he started to have other seizure types, such as tonic and myoclonic as well as the spasms. Ilmaire and Alex felt he would see more improvement on THC, and took the route other families in their situation had, with a referral to a doctor in Holland.
“It never occurred to me that the doctor in Holland would say no,” she says.
“She said she couldn’t keep taking English kids. We were left in a position where we really didn’t know what we were going to do next.”
Around the same time another UK mum was campaigning to be allowed to bring her son’s medical cannabis prescription back from Canada. Ilmarie joined her and other parents in the fight to change the law.
“It all moved really fast, for a couple of weeks it all went crazy. I was on TV, in the papers it all felt really positive,” she remembers.
“My local MP got me an appointment with Nick Hurd who was setting up the RESCAS panel and he assured me that it was for children exactly like Eddie.”
However, the panel refused Eddie’s case on the grounds that he had not yet tried epidiolex, despite the fact it had not yet been approved in the UK.
He started treatment with the drug around November 2018, with Ilmarie and Alex hopeful that he would soon be able to access a prescription for full extract cannabis on the NHS.
Their requests were turned down at the first hurdle.
Over a year later and Eddie now has a private prescription, which the family is able to fund thanks to generous donations from friends and family.
“The Bedrolite has been amazing for him, since he has been on it we haven’t had to call an ambulance and he hasn’t had any rescue medication,” says Ilmarie.
“The biggest thing was that he started to sleep through the night, which he had never done before. Sleep is huge for us as his parents but also for Eddie developmentally.”
Although Eddie is still having between one and three seizures an hour, Ilmarie believes it is the cannabis which is preventing them from being catastrophic.
“Unfortunately with infantile spasms if you don’t get them under control, 30 percent of children go on to develop Lennox Gastaut syndrome,” she says.
“The cannabis is keeping him stable and safe, but he has brain damage, and he will always have seizures. Even if it’s only helping 50 percent, it’s more than anything else has ever achieved.”
As members of the End Out Pain movement, Ilmarie and Alex are continuing to fight for access to medical cannabis on the NHS. But despite it once feeling so positive she now feels that day is as far away as ever.
“It’s really demoralising now, there are blocks everywhere and it feels like it is never going to progress,” she says.
“There is so much going on in this country now and everybody is worrying about what the effects of pandemic might be on them, financially and in terms of their own health.”
She continues: “Lockdown has made fundraising hard for the parents and a lot of the families are really panicking about running out of money, everyone is really upset.
“We already know that we might not get that long with our children, to have this added emotional stress and anxiety is really unkind.”
The Government could do more, she says, to help these families.
“We don’t know what the future holds, but we know it isn’t going to be easy,” adds Ilmarie.
“We are already scared every day, if there is something out there that is helping we shouldn’t be scared about how we are going to get access to that – that is the most heartbreaking thing.”
Molson Coors brings first CBD beverage to US
Mega brewer Molson Coors has announced its new line of non-alcoholic, sparkling CBD beverages in the US and it expands ‘beyond the beer aisle’.
The joint venture between brewing giant Molson Coors Beverage Company and Canadian cannabis firm HEXO Corp has announced its first US CBD drink will hit the market this month.
Launched by Truss CBD, Veryvell is a new line of non-alcoholic, sparkling CBD beverages, available exclusively for consumers in Colorado.
It marks the company’s first entry into the American CBD market since its inception and is another example of Molson Coors’ moves to cultivate the company’s beverage offerings.
“Last year we redefined ourselves as Molson Coors Beverage Company and in doing so, laid out a clear vision of leveraging the competitive strengths of our storied foundation in beer to grow in new spaces beyond the beer aisle,” said Pete Marino, president of the emerging growth division for Molson Coors.
“Truss’ entry into the CBD market in Colorado and the launch of Veryvell, a brand we believe will resonate well with Colorado consumers, is another example of Molson Coors’ expansion into new beverage categories.”
Veryvell has been described as having a crisp taste, containing zero calories, zero sugar and comes in three distinct varieties, each infused with 20mg of hemp-derived, non-psychoactive CBD and adaptogens.
These include, Focus, a combination of grapefruit and tarragon, Mind & Body, a blend of strawberry and hibiscus and Unwind, a mix of blueberry and lavender with ashwagandha and L-Theanine.
Jane Armstrong Hockman, Truss CBD USA general manager commented: “Whether you’ve dabbled in CBD before or are curious to try something new, Veryvell invites a moment of self-care to your day through a refreshing and balanced mix of hemp extracts and natural flavours.
“Each beverage in the product line offers a unique blend of CBD and adaptogens, giving consumers the freedom to pick the combination that best meets them in the moment. We are thrilled to bring our beverage expertise and commitment to quality to this emerging wellness category.
Veryvell is produced and distributed exclusively within Colorado, following the state’s established regulatory framework for hemp-derived CBD in food and beverages.
The diversification of the Molson Coors portfolio also includes an exclusive agreement with The Coca Cola Company to manufacture, market, and distribute Topo Chico Hard Seltzer in the US as well as an expanding roster of non-alcoholic innovations.
This includes a new energy drink being launched by a multi-faceted team of fitness, health and beverage industry change makers including Dwayne “The Rock” Johnson.
Follow @liveveryvell on Facebook and Instagram or visit www.trusscbdusa.com/
CBD and anxiety: What the research says
With more and more people reporting the use of CBD to ease stress and anxiety in these uncertain times, is the research there to back it up?
With a global pandemic raging, and many of us cut off from our friends and loved ones, it is no surprise that levels of anxiety and stress are at a high right now.
With many of our traditional stress-relieving activities – going to the gym, seeing a friend, travelling – out of bounds, and concern mounting about a rise in alcohol use, people are increasingly looking for alternative ways to relax.
A number of recent developments have once again highlighted the value of CBD in treating anxiety – so much so that a Canadian firm is developing a prescription drug based on the compound.
EmpowerPharm Inc is currently developing a unique prescription drug containing synthetic CBD as the active pharmaceutical ingredient to treat anxiety.
Pending the results of clinical research, it is thought the drug may help the thousands of Canadians who suffer from anxiety, as the firm has identified a growing need for innovative therapies as alternative treatments to avoid the addictive prescription products currently prescribed.
Meanwhile, CBD is also growing in popularity among those using it on a more recreational basis; almost half of UK users have increased their consumption since the pandemic.
A recent poll has found that more than a third (33 per cent) of Britons have tried CBD products, while 42 per cent have increased their usage since the outbreak of Covid-19, with anxiety the most common reason for using them.
While CBD has long had a reputation for promoting relaxation, research is still ongoing.
A landmark study in the US – billed as the first of its kind – was launched in October last year to investigate CBD’s use as a formal anxiety treatment.
The Cannabinoid Anxiety Relief Education Study is targeting millions of CBD and cannabis users across the US to assess the potential role of cannabinoids in reducing anxiety and other co-morbid conditions, such as insomnia and depression.
Such large-scale research is especially relevant given high Covid-19-caused anxiety levels, with many state and local governments deeming cannabis businesses “essential” and thus able to remain open during restrictions.
However, there are concerns that, while CBD can certainly help to relieve anxiety in the short-term, it is nothing more than a ‘sticking plaster’ solution.
Studies conducted by a team at Washington State University, led by phycology professor Dr Carrie Cuttler, analysed data from hundreds of people who recorded their symptoms before and after cannabis consumption.
Findings showed that in people who self-reported as having PTSD, cannabis reduced the severity of intrusive thoughts by about 62 per cent; for irritability it was 67 per cent and anxiety by 57 per cent.
However, researchers also found that there is no indication that cannabis reduced symptoms in the long-term.
Dr Cuttler cautioned: “We see a general theme that immediately after using cannabis most of the symptoms of these conditions are reduced by just over 50 percent.
“The bottom line is that it can work as an effective mask of the symptoms temporarily but it’s not benefiting the individuals in the long term.”
Such research points to the fact that, whole CBD may not be a solution for long-term anxiety, it is a useful took for treating shorter spells of stress – such as those caused by the pandemic.
US cannabis veteran launches pure CBD range
Cannabis entrepeneur, Jason Navarrete, who has almost two decades of experience in the sector, has launched a range of highly bio-available CBD products.
After selling his multi-million cannabis empire, US businessman, Navarrete has announced the launch of his new CBD range.
Navarrete is well-known in the industry having built a huge cannabis conglomerate in Southern California over the last 18 years.
Worth more than $250 million, the 120,000 square feet facility, across three industrial warehouses, focuses on high-tech hydroponic indoor cultivation, manufacturing, distribution and retail.
He sold the empire in early 2020 and transitioned from cultivating cannabis to creating what he claims are the purest CBD products on the market with his newest venture, Pure Craft CBD.
Pure Craft products are 90 percent bio-available, where most of those on the market are no more than 18 percent.
The company says being highly bio-available means Pure Craft products enter the body at a much quicker rate and are more effective than other products because they are broken down into particles that the body can absorb immediately.
Navarrete worked closely with MIT researchers to cultivate the cannabis and develop the line that includes nano-optimised broad spectrum water-soluble CBD tinctures along with soft gels, vegan gummies, CBD pet tincture, CBD broad spectrum oil and CBD with melatonin to promote sleep.
The team is also working on a full line of nano water-soluble tinctures from 600 – 3,000mg, in peppermint, tropical, strawberry mojito, orange cream, blueberry and vanilla flavours.
Navarrete believes the CBD industry is lacking the experience of cultivation experts, such as himself.
“When it comes to CBD, a lot of companies online are looking at the money aspect of an emerging industry,” he says.
“I’ve been cultivating cannabis for eighteen years. This industry is sorely lacking cultivation experts. That’s why scientists have reached out to work with me in their research.”
Navarrete explains a key factor in how he oversees his “seed to sale” process.
“We only partner with farmers that understand the importance of genetics and science in regard to cultivating premium hemp biomass.
“Our products are made following the strictest guidelines and quality control measures, allowing us to call them pharmaceutical grade.”
He is also sharing that wisdom with young entrepreneurs as an adjunct professor at the Center for Entrepreneurship at California State University, Fullerton, where he teaches young entrepreneurs about business basics.
“I’ve learned these lessons the hard way,” he explains.
“Teaching these young students the insights, skills and tricks of the trade makes me feel as if I am contributing to their entrepreneurial dreams to help them become more successful faster. The way I look at it, everything is a game and how much money you make is how you keep score.”
Pure Craft CBD offers 16 different cannabis products, which all come with third-party lab COAs (Certificates of Analysis) so consumers know exactly what’s in them and how they were tested every time.
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