The role of medical cannabis in EDS

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Last year the British Medical Journal published the first ever case study of medical cannabis as a novel treatment for chronic pain. The patient whose story broke new ground in the move towards wider acceptance of cannabis as a medicine, lives with Ehlers-Danlos syndrome (EDS). Lucy Stafford, 21, who was diagnosed with hypermobile EDS aged 17, after years of living with unexplained symptoms, has seen her health transformed with medical cannabis. Previously, Lucy was prescribed numerous treatments, including strong opioid medication and underwent surgery for a dislocated jaw. At the age of 15, her condition was so bad she was forced to leave school and a few years later, she needed the use of a wheelchair and a feeding tube.

Lucy began using cannabis medicinally at the age of 18. According to the BMJ report, within days of self-medicating her pain levels “considerably subsided” and within three months she was able to come off all her opioid medications. But more than just managing her pain levels, Lucy found cannabis helped with a range of symptoms brought on by the condition, from gastrointestinal issues to the anxiety and depression that comes hand in hand with living with a chronic illness.

“This is the first BMJ case report that attempts to quantify the multifaceted benefits given by cannabinoid medication to a multisystem condition,” says author of the report, Sabeera Dar, of University College London Medical School. “The use of medical cannabis rapidly alleviated long standing chronic pain and dramatically reduced side effects related to opioid medication as these became less necessary to take.”

Lucy is now one of over 10,000 patients who has a private prescription for medical cannabis, which was legalised for medicinal use in the UK in November 2018. She is studying biochemistry at university, and when she’s not studying is out roller skating, or campaigning for NHS access in her role as advocacy director at PLEA (Patient-Led Engagement for Access).

The BMJ paper is the first to quantify the multifaceted benefits given by cannabinoid medication to a multisystem condition. But Lucy is not alone. Many other EDS patients have seen considerable improvements in their symptoms with cannabis. A survey of 500 patients with EDS in the United States found that 37 percent used cannabis therapeutically. In the UK, after chronic pain and anxiety, EDS is one of the commonly prescribed for conditions, according to data from Drug Science’s Project Twenty21, an observational study which subsidises the cost of prescriptions in order to build the UK’s largest database for the safety and efficacy of medical cannabis.

While more research is needed to help us understand exactly why EDS patients are reporting success with cannabis, Dr Dani Gordon, a Canadian British doctor now practising in the UK and a leading expert in prescribing cannabinoids, believes that the mechanism by which cannabis medicines work in the body makes them effective in a way that conventional treatments are often not.

“In general, I find medical cannabis is one of the best quality of life medications for EDS because it affects multiple systems and symptoms across multiple domains,” says Dr Gordon “EDS is not just about being hypermobile, like many of us are taught in medical school, patients also suffer from a number of symptoms that can be difficult to treat and are often misdiagnosed. When you have this correlation of chronic pain, fatigue and poor sleep, which is often what EDS patients experience, medical cannabis can help with all these symptoms. Although it’s not a cure, in my experience, it often works better, with less side effects than the medications they are currently taking.”

This is partly due to how cannabinoids interact with the endocannabinoid system – a system in the human body responsible for restoring balance and regulating functions such as temperature and fluid levels. Dr Gordon continues: “The endocannabinoid system is a homeostatic system that works to bring balance to the brain and the body in many different ways. Just like many other chronic conditions with symptoms that cross multiple systems in the body, EDS is one of those diseases where medical cannabis is particularly beneficial, because there are cannabinoid receptors in most of our tissues throughout the brain and body, and the endocannabinoid system has so many diverse functions. Because of this we tend to see relief from symptoms that don’t necessarily appear to be connected.”

But there may be a more direct reason cannabis helps. Alongside the role of the endocannabinoid system, early evidence suggests it may play a part in reducing mitochondrial dysfunction thought to be associated with EDS.

“There’s an early theory that conditions like EDS may have a component of mitochondrial dysfunction, which contributes to symptoms such as fatigue and poor sleep, as the mitochondria are the powerhouses that make the cellular energy in our brain and our body,” adds Dr Gordon. “Early evidence suggests that cannabinoids help support the mitochondria and may even help reverse or at least, ameliorate mitochondrial dysfunction by multiple mechanisms. That may be another reason why patients respond so well to medicinal cannabis, almost universally, when you find the right mix of cannabinoid therapy for them.”

Dr Gordon cautioned that as EDS patients can be particularly sensitive to medication, it’s important to “start low and go slow” when introducing cannabinoids such as CBD and THC, using what she calls an “ultra slow titration schedule”.

Sarah Sinclair is managing editor of Cannabis Health, the UK’s leading magazine covering the use of cannabis for health and wellbeing purposes. Find out more at http://www.cannabishealthnews.co.uk and contact PLEA via www.pleacommunity.org.uk