Flexibility is a physical state many of us strive for. Many times, while doing a forward bend in yoga class, I\u2019ve glanced over with envy at a class companion with their head effortlessly positioned against their knees. Outside of the yoga studio (and in a doctor\u2019s or physical therapist\u2019s office), this might be categorised as \u201chypermobility.\u201d<\/p>\n
The most severe manifestation of hypermobility is a diagnostic symptom of the connective tissue disorder ehlers-danlos syndrome (EDS<\/span>), a genetic condition that results in severe pain, regular joint dislocations, bowel complications, and chronic fatigue.<\/p>\n
With their quality of life severely impaired, EDS<\/span> patients often find themselves on a cocktail of prescription medication. Increasingly, however, cannabis is finding favor in the EDS<\/span> community as a more effective and safe way to manage the complex symptoms they suffer.<\/p>\n
In data published in the American Journal of Medical Genetics, 37% of the 500 EDS<\/span> patients surveyed, said they used cannabis medicinally.1<\/sup> Furthermore, of both the traditional and complementary therapies used by respondents, \u201cmarijuana was self-rated as most effective.\u201d<\/p>\n
What is Ehlers-Danlos Syndrome?<\/h2>\n
EDS<\/span> is an inherited collection of connective tissue disorders caused by the abnormal structure or function of collagen, the main structural protein in the body. While officially classified as a rare disease, increasingly EDS<\/span> is believed to be more prevalent than once thought, with one analysis of patients from Wales in the UK<\/span> estimating that 1 in 500 of the local population are sufferers. Women are also more likely to be affected by EDS<\/span>.2<\/sup><\/p>\n
While EDS<\/span> is grouped into thirteen subtypes, the hypermobile EDS<\/span> (hEDS) variant is the most common and is typified by loose, unstable joints that dislocate regularly, joint pain, stretchy skin, skin that bruises easily, digestive problems, and extreme fatigue. Comorbidities are frequent and include postural tachycardia syndrome (PoTS), an abnormal increase in heart rate and dizziness on standing; mast cell activation syndrome (MACS<\/span>), resulting in allergic-like reactions triggered by normally unharmful substances; as well as fibromyalgia, and in women, endometriosis, the growth of uterine cells outside of the uterus.<\/p>\n
In general terms, very little is known about hEDS. Despite its hereditary nature, no genetic test exists for diagnosis, and physicians generally struggle to manage patients\u2019 symptoms, often resorting to long term prescriptions of heavy-duty opiates.<\/p>\n
Lucy\u2019s Story<\/h2>\n
This was the case for 21-year-old British EDS<\/span> patient Lucy Stafford, who by the age of thirteen was taking opiates every day for the excruciating pain she was enduring.<\/p>\n
\u201cI just became basically a shell of myself who couldn\u2019t really move and couldn\u2019t study,\u201d remembers Lucy. \u201cI couldn\u2019t attend school, I couldn\u2019t do all the things that I should have been doing growing up. And instead, I got progressively sicker and started taking more and more and more medications to deal with a whole range of symptoms.\u201d<\/p>\n
Being whacked out on opioids made getting through schooling almost impossible and Lucy found herself failing almost all her classes.<\/p>\n
\u201cI just thought I was lazy and I just wasn\u2019t capable of doing things,\u201d she says thinking back.<\/p>\n
As the medication got stronger (she was eventually put on fentanyl), Lucy\u2019s condition worsened. A compromised digestive system wasn\u2019t helped by the opiates she was prescribed. At her lowest point Lucy was in a wheelchair, being intravenously fed, was self-catheterizing to manage painful bladder spasms, and receiving daily nursing care.<\/p>\n
\u201cIt scares me sometimes when I think about where I was headed,\u201d admits Lucy, \u201cWe were at the point of looking at palliative care and making my life as comfortable as possible.\u201d<\/p>\n
Until cannabis entered her life.<\/p>\n
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Someone Who Can Do Things<\/h2>\n
It was Lucy\u2019s consultant who first explored cannabis with her after a change in the law in 2018 meant medicinal cannabis could be legally prescribed in the UK<\/span>. When his request was blocked, Lucy decided to source her own supply, eventually finding herself in a coffee shop in Amsterdam after catching the train there with her mom.<\/p>\n
\u201cIt was like I was experiencing pain relief and symptom relief for the first time,\u201d she remembers.<\/p>\n