Seizure-Free Days Thanks to Cannabis

UK resident Robin Emerson finds himself fighting the fight against healthcare organizations in order to help his daughter enjoy a better quality of life and potentially extend the length of her life simultaneously.  Like other parents with a child suffering from epilepsy, the road to medicine for daughter Jorja, has not been short or without peril.  Jorja was born with a severe form of epilepsy that caused her to suffer from over 30 seizures per day – before she had even turned one-year-old.  Six months of her life at that point had been spent hospitalized, and the worst of the seizures lasted up to 17 hours each.  

A series of moments in his daughter’s young life spanned the range of emotions from rage to terror but Emerson took his emotions and channeled them into finding relief for Jorja despite the known battles ahead, first seen in the Billy Caldwell case.  During research into similar stories, not only did Emerson read about the struggles in the UK, but also learned the story of a child in Australia that was the same age as Jorja and had the same condition, currently thriving under a treatment plan that contained medical cannabis.  

Jorja’s first prescription for medical cannabis was issued in 2018 after a neurologist at a private hospital was open to writing the script and importing the medicine from Canada.  Emerson recalls the nervous anticipation when administering the first dose and over five long weeks of experimentation with the medicine under Jorja’s tongue via syringe, her symptoms began to improve.  Two years later, Jorja is now four and her seizures have significantly decreased, with many days that are completely seizure-free, and on those days when they do occur, they last mere seconds, not hours.  

While those living in the UK still fight to have medical cannabis available, Emerson quit his job two years ago to work within the medical cannabis industry to gain access for patients like Jorja whose life has been saved and extended as a result of the medicine.  It’s stories like these that make us more determined than ever to change the lives of patients and educate them about options for medical cannabis and improve their quality of life.  

To read more about CBD oil from Project CBD, check out the link below. 

A Beginner's Guide to CBD Oil

Parents Fight for Access to Safe, Quality Medicine

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Oftentimes we learn about patients in the media who are struggling from having legal access to safe medicine.  While every patient story is heart-wrenching, it’s the ones about children that seem to stick with us and sometimes serve up the impetus for policy change.  Charlie Hughes is one such patient story that both touches and infuriates readers who learn of the battle his family is waging for access to medicine.

 

In the UK, parents of toddler Charlie Hughes are fighting the National Health Service (NHS) and seeking a policy change that could radically alter his quality of life.  Charlies, 3, has a rare form of epilepsy called West Syndrome, known best for its frequent seizures – up to 120 per day – and historically treated with benzodiazepines which have side effects ranging from lethargic to dazed and not effective at reducing either the seizures nor their impact. 

 

Under the NHS protocols, he has been prescribed seven different prescriptions for anti-epilepsy medication, yet he was still experiencing up to 100 seizures a day.  Charlie’s parents, Allison and Matt claim that with full extract cannabis oil, the number of seizures he experiences in the course of a day is dramatically decreased.  The family pays hundreds of pounds per month to source full extract cannabis oil privately because clinicians at NHS have refused to prescribe Dutch-made oils (which meet the European Medicines Agency guidelines for Good Manufacturing Practice).  

 

Matt said of his son’s improvement since taking cannabis: “Charlie is happier, more alert, far more vocal, constantly babbling and takes an interest in his toys. He can feed himself and loves nothing more than some rough and tumble with me. He’s come alive again.

“No one knows definitively what effect all those anti-epileptic drugs in combination with each other have on the development of the brain. If he wasn’t asleep or completely zonked out, he was just seizing. Cannabis has massively improved his general wellbeing.”

The decision in the Hughes’ case against the NHS could have profound impact on cannabis oil as medicine and the ability for parents like the Hughes to have access to what is clearly making a difference in their son’s quality of life.

Visit the link below to learn more about the Realm of Caring. Not only are they actively involved in making cannabis accessible to all who could benefit, but they provide a financial assistance program as well. 

Realm of Caring.org