Following the birth of her first child Heston, now aged seven, Marie Emma Smith began experiencing stomach problems.
Tests revealed she had a tumour on the pancreas, and further investigations showed there was one one her gall bladder, too. Marie’s mother Margarita died of a heart attack, aged 44, following the removal of both kidneys, which had developed tumours associated with a rare medical condition known as tubular sclerosis (TS).
This is the condition which Marie has inherited, and she believes her daily dose of cannabis oil helps nullify its effects. She says: “I was born with tubular sclerosis, my mum had it so we all had tests to see if we had it, too.
“Following the birth of my son I had a lot of problems with my stomach, going to the toilet all of the time,
feeling bloated and unwell. I had lots of different scans, and they found a non-cancerous tumour
on my pancreas, but, because of the sclerosis and the size it had grown, it’s best to take them out so
they don’t turn cancerous, mutate and grow into different things.
“They took most of the pancreas out -about two-thirds – the gall bladder had been affected and it was removed. “Now I have regular checks and have tumours on my liver, what’s left of my pancreas and one on my kidney.”
Epilepsy is very common in people with TS, and Marie recounted her first epileptic seizure in her late teens. She said: “When I was younger I used to blackout, although that was never investigated. I’d kind
of zone in and then zone out. “But then, when I was 19 and at university, I was doing a friends make-up and had a major seizure – a grand mal – they dialled 999, I went to hospital and the tests showed epileptic brain activity.”
The combination of epilepsy and TS, along with associated mental health issues, meant Marie was the recipient of 15 different types of medications. With their second child on the way Marie, and her partner Ross,became increasingly concerned over the plethora of prescription drugs.
She said: “I refused some of the medication. I felt it was doing me no good, I had bouts of psychosis and
I was doing lots of stupid things, I knew the medication was wrong.“I was on Quetiapine and Keppra
(for mood swings and epilepsy), amongst the others, but I was getting neurotic, these drugs were
making me mentally unwell.
“I felt like no one was listening, so I just decided there and then that enough was enough and I wasn’t doing it anymore, and I went straight on the cannabis oil.
“My mother died of a heart attack at 44 and I will take anything I can to stop myself from going down that path.” Marie, now 34, says Ross had been encouraging her to experiment with a medical cannabis oil for a number of years. They’d both researched the benefits and effects via internet forums and support groups, learning how it was helping many who were struggling with epilepsy.
She says: “I’d smoked cannabis at uni and found it helped with the epilepsy. And then I just decided to take it again. Initially it was using oil and now I take capsules; the ones with the highest strength. It has really helped my mental health, and it may even help with the tuberous sclerosis, who knows? “One capsule a day, keeps the doctor at bay,” she chuckles. “Will it shrink the tumours? I’m hoping so. I have a 1.5cm tumour on my kidney and it it increases in size by another 1cm it will have to be removed, as it may turn cancerous.”
Marie buys her medical CBD (cannabidiol) legally from an on-line store, meaning it contains none of the
psychoactive substance known as THC. She continues: “I feel like a different person. I’m a lot more focused, a lot more relaxed, not so anxious and aggressive, the tablets before were making me very aggressive, and a nasty, horrible person.“I was very short-tempered, smashing things, taking things the wrong way, just not listening, so drugged-up to the eye balls on the medication, and now I wonder why I put myself through that?
“The cannabis has calmed me down, I do not respond like that anymore, I’m not so aggressive and I’m convinced it’s the cannabis that has helped, its the only thing that’s really changed in that time.”She says her medical team are now ‘kind of supportive’, although initially, it was different.
“They thought I was crazy, absolutely crazy, they told me it was in my head that tablets could cause me so much trouble, even though you only have to look at side-effects of these drugs to realise the chemicals
they contain have an impact on the neuro-pathways in your brain.
“When I tell people I’m taking cannabis their first reaction is ‘how quickly does that make you stoned?’.“I tell them ‘No, it doesn’t do that’ and once I’ve told them there’s no THC they start to understand.” However, her family is split: “My dad is 1000% against it. It’s still cannabis to him, it’s still bad, ‘you shouldn’t be taking this’, he says. He needs to educate himself, it’s annoying and I tend not to talk about it with him.”
Although Marie’s sister is full supportive, after overcoming her initial doubts. Marie is delighted that cannabis will be available on prescription in the coming months and years. She says: “I worry that it’s Government, what are they going to do to it? Is it pure cannabis oil; other things, the right strength. I need the highest strength possible due to the epilepsy.
“I’ll carry on taking it from where I buy it, rather than messing about with it.“If I can match the same dosage and I get it on prescription, and if it can be tailored to my needs, and I can get it from the GP, that would be great.”
Like many medical cannabis users, Marie is fascinated by, and excitedly recounts, how our human cells have cannabinoid receptors. “It’s as though we’re built to have a relationship with cannabis,” she ponders.
Marie’s epileptic attacks were previously regular – averaging once a week – now it’s once every three
She says: “When the attacks come it’s like turning off a switch, it’s horrible, you cannot function.“But, now I’ve got so much more energy, more drive, more focus. I’m no longer tired all of the time.” With two active youngsters – as well as Heston there’s Jessica, aged two – this improvement in her health is bringing great benefits to the family life in rural Oxfordshire, as well as bringing renewed hope for Marie, currently a ‘full-time mum’.
In time she would like to return to work having previously enjoyed life as an adult learning development
worker and hotel receptionist. And, who knows, eventually she may be able to one day finish her training as a nurse; the university training which was cut short with her first epilepsy attack 15 years ago.
What is tuberous sclerosis?
Tuberous sclerosis is a rare geneticcondition that causes mainly non-cancerous tumours to develop
in different parts of the body.
The tumours most oftenaffect the brain, skin, kidneys,heart, eyes and lungs.
Tuberous sclerosis is present frombirth, although it may not cause obvious problems immediately.
The tumours caused by tuberous sclerosis can result in a range ofassociated health problems, including:
- learning disabilities
- the kidneys not working properly
- breathing difficulties
- a build-up of fluid on the brain
- skin abnormalities
such as patches of light-coloured or thickened skin, or red acne-like spots on the face
- behavioural problems such as hyperactivity or an autistic spectrum disorderRecent clinical trials have shown that the CBD element of cannabis can control symptoms of epilepsy.
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