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Cannabis for Ehlers-Danlos Syndrome
This 2,100-word deep dive article examines the research-based efficacy of the cannabinoids and terpenes produced by legal hemp for the treatment and support of Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome (EDS) is a collection of genetic disorders affecting the connective tissue of the human body. It manifests itself in 10 major categories, ranging from classical and hypermobility (the most common varieties) to dermatosparaxis and vascular (both of which are sometimes fatal).
Cannabis for Ehlers-Danlos Syndrome: Symptoms
The symptoms of this relatively unknown and genetically inherited syndrome can be devastating due to the fact that the resulting degradation of connective tissues affects the skin, joints, bones, blood vessels, and often several critical organs—including the heart.
It is estimated that approximately one in 5,000 people globally have some form of EDS. Of these, about one in 20,000 to 40,000 have the classical form, while one in 10,000 to 15,000 may possess the most common hypermobility variant. Overall, there are nearly 1.5 million EDS patients worldwide.
It is estimated that approximately one in 5,000 people globally have some form of EDS.
Some specialists, however, believe the number to be closer to 1 in 200. Like fibromyalgia and some other diseases, EDS appears to be under-diagnosed, with patients who are more mildly affected not included in statistics.
The most severe form of this syndrome, vascular EDS, causes the walls of blood vessels to rupture. It may also result in the rupturing and hemorrhaging of the intestines, uterus, or other organs.
EDS is the result of genetic defects in the production of collagen and always results in chronic pain for sufferers. Unfortunately, EDS also produces a perpetual fear among patients that they will dislocate a joint or otherwise damage bone sockets. This results in sometimes extreme anxiety and mobility challenges. Some EDS patients, many of whom are young women, are relegated to wheelchairs or can walk only with the assistance of a cane.
Symptomology of EDS
Cannabis for Ehlers-Danlos Syndrome. The symptoms of EDS are wider ranging than those of most diseases or syndromes. Because connective tissue affects a large portion of the human body (collagen constitutes roughly 30 percent of the protein in an average adult human), symptoms often deliver a more severe impact to the lives of patients. These symptoms include irregular heartbeat, unusually soft or elastic skin, hypermobility (fingers and limbs that extend or bend further than normal), fainting spells (typically due to a heart issues or orthostatic intolerance), and a number of other issues.
“Everything will bend backward and pop out of place without my rings,” said Kristin Means, an EDS patient advocate and lecturer.
“Everything will bend backward and pop out of place without my rings,” said Kristin Means, an EDS patient advocate and lecturer.
Means wears what many misinterpret as stylish rings that wrap back around her hands and wrists. However, instead of the latest fashion trend from Manhattan, Means’ “rings” are actually splints that assist in preventing the dislocation and overextension of her fingers and hands.
EDS affects skin, muscles, tendons, and cartilage. In fact, it damages anything in the human body involving collagen. This syndrome can manifest as such a wide set of symptoms because of the various things that can go wrong in the human body when the connective tissue in the joints, skin, and vascular system become weak or defective.
Numbness in the extremities, unusual flexibility of the joints, and circulation issues (many EDS patients become cold very easily) often haunt sufferers of this syndrome. EDS can also result in issues such as craniocervical instability (cervical slips), tethered spinal cords, overcrowding of teeth, and chronic joint pain. A kink of the brain stem, called Chiari Malformation, may result in severe headaches and stomach aches.
Said one EDS patient, “Every person presents differently.”
Said one EDS patient, “Every person presents differently.” Because connective tissue and ligaments are so weak in EDS patients, the surrounding tissue must work that much harder to maintain mobility and body posture. This is what leads to such powerful chronic fatigue in most EDS sufferers. This fatigue, in turn, causes some patients to sleep for long periods, such as 12 or 13 hours at a time.
EDS can also result in irregular heartbeat and stress on the heart. In severe cases, this can produce sudden cardiac arrest and death. Even minor injuries accumulate and don’t heal properly. Bumps, bruises, and dislocations are cumulative—something that is difficult for non-sufferers to fully understand.
Many other conditions (more than can be covered in this article) can result from the problems of EDS. Examples include early onset arthritis, osteoporosis, Mast Cell Activation Syndrome, and an inability to stand for more than a few minutes. In extreme cases, patients simply cannot stand unassisted and require a cane or wheelchair for mobility.
Bruising & Dislocations
Cannabis for Ehlers-Danlos Syndrome. Two of the most common results of most varieties of EDS are extremely easy bruising and dislocations of joints. As readers have learned, many patients, especially those with the hypermobility class of this syndrome, must wear special braces to prevent their fingers, hands, feet, and legs from extreme bending and becoming dislocated.
This can also result in weakness in the spinal cord and skull, which can produce injury to the brain and central nervous system. Often, this damage is so severe that it requires dangerous invasive surgery.
Said one EDS patient in the United States, Ramona Rinne, in a YouTube video, “My body is always covered in bruises. Especially on my legs. I can go to sleep one night, completely bruise-free, and then wake up the next morning and I have bruises all over my legs.”
She continued, “It looks like someone beat me in my sleep.”
She continued, “It looks like someone beat me in my sleep.” Many EDS patients lament the fact that their condition is so severe that they are unable to hold a job or pursue an active career. Said Rinne, who was 24 when she produced her video: “It sucks being this young and knowing you’re never really going to work,” she said. “That’s something that I think most young people take for granted. They take going to school for granted and they take getting jobs for granted and having the energy to volunteer.”
“I devoted a lot of time and effort to becoming a lawyer,” said Alison Gary, a 39-year-old attorney with the hypermobility type of EDS who resides in Portland, Oregon. “I always planned to be a career-focused person,” said Gary during an exclusive interview.
“Unfortunately, I was only able to practice law for a year before my health tanked and I had to retire to full disability.”
Gary explained how her life changed dramatically following her diagnosis. “Now I’m basically a professional physical therapy patient. It has been six years since I stopped working; I’m still grieving the loss,” she lamented.
Misdiagnosis of EDS is Common
Cannabis for Ehlers-Danlos Syndrome. Ehlers-Danlos can manifest in the form of many conditions, all of which may feature overlapping symptoms. This is why EDS is a syndrome, not itself a disease. Because EDS patients often have arthritis, fibromyalgia, lupus, and depression, physicians unfamiliar with it or lacking experience in this area may misdiagnose Ehlers-Danlos as one of these—when the misdiagnosed condition is actually only one manifestation of the syndrome.
EDS patients are routinely misdiagnosed with a number of diseases or other conditions. These include chronic fatigue, multiple sclerosis, hypochondria, growing pains in children, child abuse (easy bruising), anxiety, benign joint hypermobility, irritable bowel syndrome and substance dependence.
Uninformed doctors who continually tell EDS patients in pain that they are hypochondriacs are especially taxing. The reasons for this lack of diagnostic accuracy in the medical community are complicated and many. However, it is caused primarily by the fact that EDS manifests itself in such a wide number of ways.
In fact, one EDS sufferer can exhibit an almost totally different set of symptoms than another. It is theorized that many ambiguously classified cases of fibromyalgia may, in fact, be EDS that has simply been misdiagnosed.
“There are so many people in the EDS community diagnosed with both EDS and fibromyalgia. While I believe you can have both, I wonder if many received their fibro diagnosis before their EDS, as an EDS misdiagnosis,” said Gary.
“There are so many people in the EDS community diagnosed with both EDS and fibromyalgia. While I believe you can have both, I wonder if many received their fibro diagnosis before their EDS, as an EDS misdiagnosis,” said Gary.
Many EDS support groups and advocacy organizations push the issue of patient integrity and support for those who may not agree with the diagnosis of a physician.
"Regardless of whether you think you have EDS or any other disease, you are your best advocate and only you know your body," writes EDS advocacy organization Princess and the Pea Group on its website. The organization encourages those who believe they may have EDS to question their doctors if they feel they are being misdiagnosed. "Trust in yourself and fight for what you think is right. Get second or third opinions if necessary and never give up."
How Cannabis Helps EDS
Cannabis for Ehlers-Danlos Syndrome. Cannabis and its constituent cannabinoids, such as THC and CBD, react with cannabinoid receptors located throughout the human brain and body to provide three primary efficacies:
Analgesia (pain relief)
Inflammation reduction
Anti-nausea
Because all EDS patients suffer chronic pain, and many are victims to bruising and other forms of inflammation (including that of the brain), cannabis is especially helpful.
Many EDS patients also suffer stomach pain and nausea, meaning that cannabis is uniquely qualified to treat this set of symptoms.
"EDS affects multiple body systems and can cause a wide array of symptoms," said Gary. "These symptoms can include pain, muscle spasms, nausea and digestion issues, depression, anxiety, autonomic dysfunction, and sleep issues," she said.
Many EDS patients also suffer stomach pain and nausea, meaning that cannabis is uniquely qualified to treat this set of symptoms.
In traditional medicine, these symptoms would be treated by multiple medications, each targeting a different symptom or couple of symptoms, and each medication delivering different potential side effects. As medication metabolism issues are common in the EDS population, finding the right medication or dose for a patient may require a long process of trial and error.
Cannabis, however, may be able to treat multiple symptoms. Cannabis therapy has allowed some patients, myself included, to reduce the dose or even the number of medications a patient needs. Particularly with the difficulty of getting opiate pain medications these days, cannabis is an important tool in my symptom management toolbox.Cannabis isn't a cure, and it won't work for everyone, but I wish everyone had the option to try it and to see if it helps.
"EDS affects multiple body systems and can cause a wide array of symptoms, which can differ from patient to patient," said Gary. She explained how these symptoms can include pain, muscle spasms, nausea and digestion problems, depression and anxiety, autonomic dysfunction, and sleep issues, among many others.
Gary, who relocated to Oregon to gain safe access to cannabis, believes that cannabis helps all of her symptoms to provide holistic relief. She is happy that she can replace or supplement many traditional drug therapies.
"In traditional medicine, these symptoms would be treated by multiple medications, each targeting a different symptom or couple of symptoms, and each medication has different potential side effects," said Gary. "Medication metabolism issues are common in the EDS population; thus, finding the right medication or dose for a patient may require a long process of trial and error," she continued.
"Cannabis therapy has allowed some patients, myself included, to reduce the dose—or even the number of medications—a patient needs," said Gary.
Gary explained how cannabis may be capable of treating multiple symptoms. "Cannabis therapy has allowed some patients, myself included, to reduce the dose—or even the number of medications—a patient needs." She said that she considers cannabis to be an important tool in her symptom management toolbox. "Cannabis isn't a cure and it won't work for everyone, but I wish everyone had the option to at least try it to see if it can help," she said.
"I credit cannabis with providing a higher quality of life than I had before I had access to it. I wish all EDS patients were able to see if cannabis could help them," concluded Gary.
Depending on the symptoms to be treated, cannabis can be consumed using a variety of methods which include smoking dried flowers, vaporizing potent concentrates, eating edibles, or sublingual tinctures and sprays. Cannabinoid therapies have advanced significantly in the last decade, and as a result many products can provide symptom relief without a psychotropic (euphoric) effect.
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