By Gooey Rabinski
Ehlers-Danlos Syndrome, or 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 (which can be fatal).
The symptoms of this relatively unknown and inherited syndrome can be devastating due to the fact that the resulting degradation of connective tissues affects the skin, joints, bones, blood vessels, and many critical organs — including the heart.
It is estimated that roughly 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 have the most common hypermobility variant. Overall, there are nearly 1.5 million EDS sufferers worldwide.
The most severe form of this syndrome, called vascular EDS, causes the walls of blood vessels to rupture. It may also result in 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 canes.
The symptoms of EDS are far wider ranging than in most diseases, conditions, or syndromes. Because connective tissue affects such a large portion of the human body, symptoms include unusually soft or elastic skin, irregular heartbeat, hypermobility (fingers and limbs that extend or bend much further than is normal), fainting spells (often due to a weak heart 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
Kristin Means showing the rings and braces that prevent her joints from bending backwards and popping out of place.
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 help prevent 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 cervical slips, tethered spinal cords, overcrowding of teeth, and chronic joint pain. A kink of the brain stem may result in severe headaches and stomach aches.
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.
Kristin Means demonstrating elastic skin caused by EDS.
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 arecumulative — 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, 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 and Dislocations
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.”
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 spent years in school training to be a lawyer before my diagnosis,” said Alison Gary, a 31-year-old with the hypermobility type of EDS.
“I was able to practice law for only a year before I had to stop working due to health problems,”
said Gary in an exclusive interview with Whaxy.
“Now I have school debt and do not know if I will ever be able to hold a full-time job, let alone practice law again. I wish I had known about my EDS sooner,” she continued.
Alison Gary suffers from hypermobility EDS, and uses cannabis to treat symptoms.
Ehlers-Danlos can manifest itself as many conditions and other diseases; this is why it is a syndrome, not itself a disease. Because EDS patients often havearthritis, fibromyalgia, lupus, and depression, physicians unfamiliar with it or lacking experience with such patients 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,”
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 Does Cannabis Help?
Cannabis and its constituent cannabinoids, like THC and CBD, react withcannabinoid receptors located throughout the human brain and body to provide three primary efficacies:
- Analgesia (pain relief)
- Inflammation reduction
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 presents wide-ranging symptoms. These are traditionally treated with a different drug for each symptom — muscle spasms, pain, inflammation, nausea, depression, poor sleep…”
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.
“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.”
Depending on the symptoms to be treated, cannabis can be consumed using avariety of methods which include smoking dried flowers, vaporizing potentconcentrates, 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 the cerebral euphoria known as being high.