A medical cannabis patient living with Ehlers-Danlos syndrome (EDS) has broken new ground in the move towards widespread acceptance of cannabis as a medicine.
Lucy Stafford has seen her health transformed through medical cannabis.
It marks the first time a case study of medical cannabis as a treatment for chronic pain has appeared in the highly-respected publication.
The first case study of medical cannabis as a novel treatment for chronic pain has been published in the British Medical Journal.
A medical cannabis patient living with Ehlers-Danlos syndrome (EDS) has broken new ground in the move towards widespread acceptance of cannabis as a medicine.
Lucy Stafford has recently seen her journey treating the condition with medical cannabis, published in the British Medical Journal (BMJ).
It marks the first time a case study of medical cannabis as a treatment for chronic pain has appeared in the highly-respected publication.
Stafford, who was diagnosed with hypermobile EDS aged 17, after years of living with symptoms, has seen her health transformed through medical cannabis.
EDS is a multisystemic condition, meaning it affects many of the body’s organ systems. Since the age of 10, Stafford had lived with debilitating symptoms, which resulted in her leaving school at the age of 15.
She was prescribed numerous treatments, including strong opioid medication and underwent surgery for a dislocated jaw.
By the time she accessed medical cannabis at the age of 18, she had to be fed through a feeding tube and was reliant on a wheelchair.
Lucy was reliant on a wheelchair before accessing medical cannabis
According to the report, within days of self-medicating with cannabis, Stafford’s pain levels “considerably subsided” and within three months she was able to come off all her opioid medications.
A survey of 500 patients with EDS in the United States found that 37 percent used cannabis therapeutically and according to the paper’s author Sabeera Dar, of University College London Medical School, there is growing evidence for this in the UK too.
But research of the use of cannabis in this condition is severely lacking.
Dar writes that she hopes to “shed more light on this subject” to support a better understanding of the “improved clinical outcome” in patients.
“This is the first BMJ case report that attempts to quantify the multifaceted benefits given by cannabinoid medication to a multisystem condition,” Dar tells Cannabis Health.
“It explores how chronic pain impacts many aspects of life and for this reason urges the profession to embark on further research on medical cannabis as a potential solution.”
The pair spent hours working through Stafford’s medical records to create a full picture of her journey through the healthcare system, something Stafford describes as “traumatic” at times, but ultimately a “healing” process.
“Getting to grips with the complexities in Lucy’s journey with the healthcare system and her medication regime was challenging,” admits Dar.
“I wanted to make sure we mapped everything in enough detail to show just how significantly the medical cannabis has helped her.
“The key findings in this case report stem from the patient’s story. 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.”
Stafford, now advocacy director for patient organisation, PLEA (Patient-Led Engagement for Access) hopes this marks the beginning of patients being seen as the real evidence for the efficacy of medical cannabis.
“I see myself as the guinea pig for how patients will become the evidence and how we can communicate it in a powerful way that clinicians and academics will take seriously and understand,” she says.
“Working with PLEA we are hoping to see many more case studies published, particularly of those rare conditions for which cannabis is transformational where nothing else is.”
In her paper, Dar highlights the lack of clinical evidence preventing doctors from prescribing and suggests that adopting a “patient-centred approach” to research, will allow for “vast swathes of reports illustrating the therapeutic benefits of medical cannabis”.
She says: “Despite there being a plethora of real-world patient stories online documenting a marked therapeutic benefit from medical cannabis there remain few randomised controlled trials, this is one of the reasons why physicians are hesitant to prescribe medical cannabis.
“Therefore, practically speaking in order to see the ease of access we want, we need to widen patient participation in such trials and begin to clarify which patients could benefit the most.”
Addressing barriers to access of prescribed medical cannabis, supporting clinical expertise and expanding clinical data collection regarding the therapeutic and wider economic benefits of medical cannabis, are noted as three key learning points from the report.
Initiatives such as Project Twenty21, which aims to collect the UK’s largest body of evidence for the efficacy of medical cannabis are already working towards these goals, collecting real-world data from patients enrolled on the scheme.
But Stafford highlights the importance of having individual case studies alongside this data, which show the breadth of the impact medical cannabis can have on a patient’s life.
“Real world evidence and registries like Project Twenty21 are so important, but so is understanding the day to day impact of these medicines,” she says.
“They are not like other medications where it just affects one aspect of your condition, cannabis is so holistic and only case studies will truly show the wide ranging impact they have on the patient’s quality of life, but also on their family and all aspects of their care.”
She adds: “I hope that my experiences will contribute towards clinician’s education and understanding of medical cannabis and hopefully invigorate some research into EDS and cannabis.”