Treating pain associated with Ehlers-Danlos syndrome with medical cannabis
The first survey of medical cannabis as a new treatment for chronic pain has been published in the British Medical Journal. A patient with Ehlers-Danlos syndrome (EDS) broke new ground in the process of widespread acceptance of cannabis as a medicine. This is the first time that a case study on medical cannabis as a treatment for chronic pain has been published in this well-respected publication.
Lucy Stafford recently had her journey of treating illness with medical cannabis published in the British Medical Journal (BMJ). Stafford, who was diagnosed a hypermobile SDE at the age of 17, after years of living with symptoms, saw his health transform thanks to medical cannabis.
EDS is a multisystem disease, which means that it affects many organ systems in the body. Since the age of 10, Stafford had lived with debilitating symptoms, which led to her dropping out of school at the age of 15.
She was prescribed many treatments, including strong opioid drugs, and she had surgery for a dislocated jaw. When she first got access to medical cannabis at the age of 18, she had to be tube-fed and relied on a wheelchair.
According to the report, within days of self-medicating with cannabis, Stafford's pain levels "drastically decreased" and within three months she was able to stop all of her opioid medications.
A survey in the United States of 500 patients with EDS found that 37% of them used cannabis for therapeutic purposes and, according to the author of the article, Sabeera Dar of the medical school of University College London, there is growing evidence of this use in the UK as well. But research on the use of cannabis in this pathology is sorely lacking.
Dar writes that she hopes to “shed more light on this topic” to better understand “improved clinical outcomes” in patients.
“This is the first case report from the BMJ that attempts to quantify the multifaceted benefits provided by cannabinoid drugs to a multisystem condition,” Dar explains to CannabisHealth.
“It explores how chronic pain impacts many aspects of life and, for this reason, prompts the profession to embark on new research into medical cannabis as a potential solution. "
The duo have spent hours working through Stafford's medical records to create a complete picture of their journey through the healthcare system, something Stafford describes as "traumatic" at times, but ultimately a "healing" process.
“It was difficult to understand the complexity of Lucy's journey through the healthcare system and her medication regimen,” Dar admits. I wanted to make sure we mapped everything out in enough detail to show how much medical cannabis has helped her.
The main conclusions of this case report derive from the patient's history. The use of medical cannabis quickly relieved long-standing chronic pain and dramatically reduced the side effects of opioid drugs, which became less necessary to take.
Mr Stafford, who is now the Advocacy Director of the Patient Organization PLEA (Patient-Led Engagement for Access), hopes that this marks the beginning of the consideration of patients as the real proof of the effectiveness of medical cannabis.
“I see myself as the guinea pig of 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.
“By working with PLEA, we hope to see many more case studies published, especially on those rare diseases for which cannabis is transformative where nothing else is. "
In her article, Dar highlights the lack of clinical evidence that prevents physicians from prescribing and suggests that taking a "patient-centered approach" to research will yield "large swathes of reports illustrating the benefits. therapies of medical cannabis ”.
She says: "Despite a plethora of patient stories online documenting significant therapeutic benefit from medical cannabis, there are few randomized controlled trials, which is one reason why doctors are reluctant to prescribe. medical cannabis.
“Therefore, from a practical standpoint, in order to see the ease of access we want, we need to broaden patient participation in such trials and start clarifying which patients could benefit the most. "
Removing barriers to access to prescribed medical cannabis, supporting clinical expertise, and expanding clinical data collection regarding the broader therapeutic and economic benefits of medical cannabis are the three main lessons of the report.
Initiatives such as the project Twenty21, which aims to collect the most evidence for the effectiveness of medical cannabis in the UK, is already working towards these goals, collecting real data from patients enrolled in the program.
But Stafford stresses the importance of having individual case studies alongside this data, which shows the extent of the impact medical cannabis can have on a patient's life.
Practical evidence and records like Project Twenty 21 are very important, but it is just as important to understand the daily impact of these drugs, ”she said.
"They are not like other drugs that only affect one aspect of your disease, cannabis is so holistic and only case studies will really show the widespread impact they have on the patient's quality of life," but also on his family and all aspects of his care. "
She adds, “I hope my experiences will contribute to clinicians' education and understanding of medical cannabis and stimulate research into EDS and cannabis. "