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Can medical cannabis be prescribed for Ehlers-Danlos syndrome?


The cannabis plant is one with immeasurable therapeutic potential. With accumulating evidence in favour of using medical cannabis to manage chronic pain, mental health disorders, and countless other conditions, scientists continue to discover new ways to harness the powerful properties of cannabis medicines.

The media often overlooks ways in which this powerful plant can help those living with more underrepresented conditions. Could UK patients living with EDS could benefit from medical cannabis? Studies suggest cannabis could solely manage a myriad of symptoms that would otherwise rely on a cocktail of therapies and meds.

What is EDS?

Ehlers-Danlos syndromes, better known as EDS, are a group of conditions that affect the connective tissue. They are rare, inherited conditions that are thought to affect 1 in every 200 to 500 people. Most cases, however, are mild and may go undiagnosed.

EDS impacts the skin, tendons, ligaments, blood vessels, and bones. Of the thirteen types of EDS, hypermobile EDS is the most common. Others include classical EDS, vascular EDS and kyphoscoliotic EDS. Despite the variation between these EDS types, shared symptoms include:

  • Hypermobile joints
  • Stretchy and fragile skin
  • Widespread pain or muscles aches
  • Fatigue
  • Sleep problems

Women with EDS may also experience gynaecological issues, such as more heavy, painful, irregular periods, and pain during sex.

There is currently no cure for EDS. Instead, treatments such as physiotherapy and cognitive behavioural therapy (CBT) focus on symptom management. They also aim to provide coping mechanisms for long-term pain as a means to improve wellbeing and quality of life. 

Those who experience chronic pain with EDS may also benefit from anti-inflammatory painkillers or opioids, such as codeine or morphine. If these first-line therapies do not achieve adequate pain control, or for those who wish to avoid potentially harmful pain management options, medical cannabis may be considered as an alternative treatment.

Medical cannabis and EDS in the UK

In 2018, UK law was changed to permit doctors on the General Medical Council’s specialist register to prescribe cannabis-based medicines for many qualifying health conditions. Patients living with EDS in the UK are now able to access medical cannabis through private clinics, but is it an effective treatment?

One study, published in the American Journal of Medical Genetics, surveyed over five hundred EDS patients and found that 37% of respondents used cannabis for medical purposes. Researchers also concluded that cannabis “was self-rated as most effective” of both traditional and complementary therapies.

A recent case report, published in the BMJ, also found that cannabinoid-based treatment “drastically reduced” pain and enhanced the quality of life of an 18-year-old woman with hypermobile EDS. The findings highlight the value of medical cannabis in managing symptoms and related complications of EDS.

Cannabinoid medicine physician Dr Dani Gordon says the unique ability of cannabis is that it can manage pain, sleep, and chronic fatigue; this multi-symptom management sets it apart from other pharmacological interventions. For example, common comorbidities of EDS include nausea, vomiting, and gastrointestinal discomfort, as well as anxiety and depression – all of which are symptoms shown to be improved by cannabis-based medicines. Similarly, medical cannabis is commonly used to manage endometriosis, which may also benefit women living with EDS who also experience gynaecological dysfunction.

According to Lucy, Advocacy Director at Patient-Led Engagement for Access and EDS patient who uses medical cannabis, her prescription not only helps to directly relieve pain, but also makes her stronger in more indirect ways. “I now do physio multiple times a day,” she tells Project CBD. “Before cannabis, I just could not engage with that at all.” 

How does it work?

Much more research is needed to establish exactly how cannabis specifically helps to manage EDS symptoms. Existing experimental research into the major cannabinoids in cannabis, cannabidiol (CBD) and tetrahydrocannabinol (THC), has shown their ability to target some of the pain pathways in our nervous system and subsequently mitigate the sensation of pain. Though it is not yet known how this directly translates to EDS.  

Dr Anthony Ordman, leading pain expert and clinical director at Integro Medical Clinics, says that cannabis likely helps to “settle down” pain processing circuits in the central nervous system that are otherwise hyper-excitable in EDS patients. They “re-balance them in a way most conventional medicines are unable to do,” Ordman tells Cannabis Health News.

Is medical cannabis safe?

As with any medication, adverse effects are not uncommon with medical cannabis. Mild side effects have been noted in the majority of studies, though most are typically resolved with persistent use. The most common side effects include dizziness, fatigue, dry mouth, appetite changes, and nausea. Since a co-morbidity of EDS is gastrointestinal issues, this is a potential contraindication. That said, medical cannabis clinicians will help to tailor the medicine to you to rectify any adverse effects. 

Further, there is ample evidence to suggest that medical cannabis is safer than existing pain relief medications. Opioids, for instance, have an incredibly high potential for abuse and severe withdrawal symptoms. The cannabis plant – when cultivated correctly, in the absence of toxic chemicals – is not inherently harmful and cannot cause an overdose. Whilst cannabis can be abused, most people do not become addicted. 

I’m eligible – what do I do next?

As it stands, NHS medical cannabis prescriptions are currently reserved for patients with the following conditions: 

  • Rare, severe forms of epilepsy
  • Vomiting or nausea caused by chemotherapy
  • Muscle stiffness and spasms caused by multiple sclerosis (MS)

Instead, any eligible patients with EDS or other qualifying conditions may be eligible for a private prescription through one of the UK clinics. You can either apply to a clinic directly or through your GP. In the initial consultation, a doctor will look at the patient’s medical history and what medications and treatments they have tried in the past to assess the patient on an individual basis.

Costs will vary between clinics; consultations typically range between £50 and £200 and the average prescription is around £150-£250 per month. For patients involved in schemes such as Project Twenty21, however, prescriptions are capped at £150 per product per month in exchange for participating in ongoing clinical studies. 

For more information about the process, take a look at leafie’s extensive guide to getting a medical cannabis prescription in the UK.

If you or a loved one has an EDS condition and feels in need of support, local support groups, led by Ehlers-Danlos Support UK, can be found here


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