Cannabis and Ehlers-Danlos Syndrome | CBD project

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Flexibility is a physical state that many of us strive for. Many times, as I made a forward bend in yoga class, I looked enviously at a classmate with his head effortlessly pressed against his knees. Outside of the yoga studio (and in the office of a doctor or physiotherapist), it could be classified as “hypermobility”.

The most severe manifestation of hypermobility is a diagnostic symptom of connective tissue disorder ehlers-danlos syndrome (EDS), a genetic condition that causes intense pain, regular joint dislocations, intestinal complications, and chronic fatigue.

With its severely deteriorated quality of life, EDS patients usually take a prescription cocktail of medications. However, more and more, cannabis finds favor with the EDS the community as a more effective and safe way to control the complex symptoms they suffer.

In the data published in American Journal of Medical Genetics, 37% of the 500 EDS Patients surveyed said they used cannabis medicinally.1 In addition, of the traditional and complementary therapies used by respondents, “marijuana was self-assessed as the most effective.”

What is Ehlers-Danlos Syndrome?

EDS is an inherited collection of connective tissue disorders caused by the abnormal structure or function of collagen, the body’s main structural protein. Although it is officially classified as a rare disease, more and more EDS is thought to be more common than previously thought, with an analysis of Welsh patients in the UK loving that 1 in 500 of the local population they are sick. Women are also more likely to be affected EDS.2

While EDS is grouped into thirteen subtypes, the hypermobile EDS (hEDS) is the most common variant and is characterized by loose, unstable joints that regularly dislocate, joint pain, elastic skin, easily contested skin, digestive problems, and extreme fatigue. Comorbidities are common and include postural tachycardia syndrome (PoTS), an abnormal increase in heart rate, and dizziness when standing still; mast cell activation syndrome (MACS), resulting in allergic reactions triggered by normally harmless substances; as well as fibromyalgia and in women, endometriosis, the growth of uterine cells outside the uterus.

In general, very little is known about hEDS. Despite its hereditary nature, there is no genetic test for the diagnosis and doctors often struggle to control patients ’symptoms, often resorting to long-term prescriptions for heavyweight opiates.

Lucy’s story

This was the case for 21-year-old British youth EDS the patient Lucy Stafford, who at thirteen took opiates every day for the cruel pain she suffered.

“I just basically became a shell of myself that I couldn’t really move and couldn’t study,” Lucy recalls. “I couldn’t attend school, I couldn’t do all the things I should have been doing growing up. And instead, I got sicker and sicker and started taking more and more medications to deal with a whole series of symptoms. ”

Being beaten with opioids made school practice almost impossible and Lucy found herself failing almost all of her classes.

“I just thought she was lazy and just not able to do things,” she says thinking back.

As the medication intensified (he was eventually given fentanyl), Lucy’s condition worsened. The opiates prescribed to him did not help a compromised digestive system. At her lowest point, Lucy was in a wheelchair, fed intravenously, self-catheterized to control painful bladder spasms, and received daily nursing care.

“Sometimes it scares me when I think about where I was going,” Lucy admits, “We were about to look at palliative care and make my life as comfortable as possible.”

Until cannabis came into his life.

Someone who can do things

It was Lucy’s consultant who first explored cannabis with her after a law change in 2018, which meant that medical cannabis could be legally prescribed in the UK. When her request was blocked, Lucy decided to stock up on her own supply and eventually found herself in an Amsterdam cafe after catching the train there with her mother.

“It was like I was experiencing pain relief and symptom relief for the first time,” she recalls.

On his return to the UK, Lucy finally received a legal prescription through a private clinic. This has allowed him to completely get out of opiates. And in what might seem like a miraculous transformation, Lucy has gone from being a wheelchair bound to walking 5 miles a day, skating on wheels and swimming in the sea where she lives in Brighton.

“I’ve become much stronger because I’ve been consuming cannabis,” Lucy says. “The best treatment for EDS he is becoming as strong as possible and now I do physiotherapy several times a day. Before cannabis, I couldn’t participate at all. “

Lucy, who is director of defense at Patient-led access commitment, is now also better equipped to tackle her academic studies and begins a neuroscience degree in the fall.

“I’ve always thought, ‘Oh well, I’m someone with potential.’ And now I really am someone who can do things. “

Ellen’s story

Unlike Lucy, Rhode Island resident Ellen Lennox Smith, 71, was not officially diagnosed. EDS until the age of fifty.

She had been hypermobile when she was little and, with a lot of sensitivities to food and medication, her pediatrician said she was allergic to her own body. That said, Ellen lived a normal life as a teacher, wife, and mother, until her health was broken at the age of forty.

“I just lived with so much pain, sore throat, brain fog and couldn’t think well,” Ellen recalls. “I had to have sheets of child traps in my class … I had to leave where they were sitting to remember their names. It was so serious.”

After multiple surgeries to improve the pain she was experiencing from the joints of her regular dislocation, such as Lucy, Ellen finally found herself in a wheelchair. And to end her misery, her inability to metabolize most medications made her forced to endure cruel pain without medication.

In the end, it was a pain specialist who suggested cannabis.

“I sat there and laughed at him,” recalls Ellen, who was unaware of the usefulness of cannabis for her condition.

Few other options

With few other options on the table, Ellen enlisted the help of a friend’s son who taught her how to turn the cannabis flowers she had purchased from the black market into cannabis oil.

“I went to bed and the next thing I know, it was morning,” he recalls, referring to the first night of decent sleep he had enjoyed for years.

In addition to controlling pain, quality sleep has been one of the key benefits Ellen has experienced since she took her teaspoon of homemade cannabis oil every night.

“What a gift it is to achieve a deep and quality sleep. That also helped me get stronger, ”he explained.

And Ellen has become stronger. At 71, the wheelchair days are behind her and she says it’s the best she’s ever felt. Ellen currently helps direct Rhode Island EDS support group, is part of the board of directors of the National Pain Foundation and is committed to spreading the news EDS patients on the therapeutic benefits of cannabis.

A vision of the doctor

Canadian doctor of integrative medicine and cannabinoids Dr. Dani Gordon has seen first-hand the unique ability of cannabis in managing the pain, sleep and chronic fatigue they experience EDS patients.

“Medicinal cannabis can help with these three problems greatly,” says Dr. Gordon, “and it’s generally well tolerated (as long as you start with a very small dose, especially with THC and gradually graduating). Lots of people with EDS they are sensitive to other drugs and have more side effects than average ”.

Gordon sees it regularly EDS patients successfully decrease their pill load when consuming cannabis medicinally.

“Cannabis has such a huge impact on quality of life EDS patients, ”he says,“ and can also reduce the amount of medication they need to feel good. It is very common to reduce other medications, such as sleeping pills, pain pills, and even antidepressants and antianxiety, once stable in medicinal cannabis. I wish more doctors and patients with EDS I knew this treatment as an option “.

While investigating what role the endocannabinoid system may play in the development of EDS there are symptoms, Dr. Gordon suspects the interaction between phytocannabinoids and phytocannabinoids ECS worth exploring.

“Because cannabis affects all of the most problematic and difficult-to-treat associated symptoms at once, it can work in regulating symptoms. ECS in some way, ”he suggests. “There may be a possible connection between fascia dysfunction (which we see in EDS) and the activation of the endocannabinoid system and a possible link with the regulation of inflammation “.

A call for more research

In the world of cannabis, it is not uncommon for drug development to be patient-led. In fact, we’ve seen how GW Sativex de Pharma, multiple sclerosis (MS) the patient experience inspired his development.

Interestingly, figures of the UK‘s MS Society suggest that the incidence of MS is a bit similar to EDS. Therefore, it could be argued that there is as much to be gained for pharmaceutical companies in investing in the development of a cannabis-based drug for ehlers-danlos syndrome as in multiple sclerosis.

Dr. Gordon has her own theories as to why pharmaceutical companies have shown little interest EDS.

“As with most conditions that disproportionately affect women,” she notes, “research on women’s health and related conditions tends to lag behind.”

At the time of writing, Project CBD It has been said that preliminary data are being collected in several studies on the effectiveness of cannabis a EDS patients. If the results reflect the overall positive anecdotal evidence so far, it may be enough to stimulate interest in the cannabis industry and conduct much-needed clinical research.1

Lucy’s story appears on the podcast Cannabis Voices.


Mary Biles, a UKjournalist, educator and grassroots project CBD collaborating writer, is the author of He CBD Book (Harper Collins, UK).

Copyright, project CBD. Cannot reprint without permission.


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