New Study Shows Rate of Ehlers-Danlos Syndrome Patients Treating Symptoms With Cannabis

New research out this month suggests that medical cannabis is extremely prevalent among patients looking to treat symptoms for a serious tissue disorder.

The study, which will be published in the American Journal of Medical Genetics, found that more than one-third of patients diagnosed with Ehlers-Danlos syndrome (EDS) have used marijuana to manage symptoms.

NORML, which reported on the study last week, said that the researchers found that 37 percent “reported having used cannabis therapeutically,” with cannabis use particularly prevalent “among patients who reported experiencing either moderate or severe pain.”

“Of all of the traditional and complementary therapies used by respondents, ‘marijuana was self-rated as most effective,’” NORML noted in its write-up.

What is EDS?

The National Institute of Health defines Ehlers-Danlos syndrome as “a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues,” the outlook for which can “range from mildly loose joints to life-threatening complications.” The hallmark symptoms of Ehlers-Danlos syndrome are extremely flexible joints and elastic-like skin that is susceptible to bruising.

According to the NIH, Ehlers-Danlos syndrome “appears to be at least 1 in 5,000 individuals worldwide.”

The research published in the Journal of Medical Genetics, which was subsidized with grant support from University of Colorado Center for Innovative Design and Analysis, was based on surveys with “over 500 individuals through the EDS Society who reported having been diagnosed with EDS or HSD to ascertain what complementary and alternative therapies were used and their reported effectiveness in alleviating pain and improving quality of life.”

The authors said they “focused on the use of traditional Chinese therapies, herbal medications, and marijuana.”

“The most commonly reported therapies, used by 70-92% of participants, were non-steroidal anti-inflammatory drugs, acetaminophen, opioids, and physical therapy,” the authors wrote. “Therapies rated by participants as most efficacious were opioids, physical therapy, and marijuana with 10-24% of those using these therapies rating them as extremely helpful. Patient-initiated complementary therapy use in EDS/HSD patients is widespread at 56%. Complementary therapies were largely utilized by EDS/HSD patients with higher reported pain levels. Providers caring for EDS/HSD patients should be aware of these data showing broad usage of predominantly non-prescribed therapies and be prepared to consider such usage in working collaboratively with these patients to develop comprehensive treatment plans to manage their chronic pain complications.”

NORML noted that “[a]lthough EDS is listed as a qualifying condition for medical cannabis therapy in a handful of states – including Connecticut, Illinois, and New Hampshire – there exists little clinical data assessing its safety and efficacy for patients with the disease.” 

Connecticut added EDS to the list of qualifying conditions earlier this year when it expanded its pool of potentially eligible patients. Lawmakers in the state also gave the greenlight for medical cannabis to be prescribed to patients suffering from chronic pain for more than six months. 

The state’s medical marijuana program, which was established by legislators in 2012, has 38 qualifying conditions for a cannabis prescription after the addition of EDS and prolonged chronic pain.