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Treating Ehlers Danlos Syndrome with cannabis By Sharon Letts   Ellen Smith didn’t become a patient until well into her 50s, after suffering a lifetime of pain and discomfort. “At the age of 57, I never thought I’d even consider turning to medical marijuana,” she shared. “After 22 surgeries, I visited a pain doctor who, […]

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Treating Ehlers Danlos Syndrome with cannabis

By Sharon Letts

 

Ellen Smith didn’t become a patient until well into her 50s, after suffering a lifetime of pain and discomfort.

“At the age of 57, I never thought I’d even consider turning to medical marijuana,” she shared. “After 22 surgeries, I visited a pain doctor who, after reviewing my records, saw that I was unresponsive to pain medication. He had no other suggestions but to suggest medical marijuana.”

A DNA drug sensitivity test confirmed she could not metabolize most pharmaceuticals or even the most benign over-the-counter medications, such as aspirin or Tylenol – and specifically stronger pain medication, such as opioids.

Smith’s health woes began at birth, diagnosed with Ehlers Danlos syndrome, later adding sarcoidosis. 

Ehlers-Danlos syndrome is a collection of disorders affecting connective tissues, such as skin, joints, and blood vessel walls. Connective tissues make up proteins and other substances that provide strength and elasticity to the underlying structures in the body. Those affected by the syndrome have a life expectancy of 48 years, with a major health event by the time they are 40.

Sarcoidosis is an inflammatory disease affecting organs, with a life expectancy of ten years since diagnosis, or an average death rate of 39 years of age.

“I had been living with chronic pain, and it prevented me from sleeping, thinking straight, and basically functioning throughout the day,” she added. “I took the advice to try medical marijuana with tremendous trepidation.”

Her home state of Rhode Island was legal at this time but no compassion centers had opened yet. making sourcing the plant for medicine challenging. Smith said, at the time, you would have to grow your own or source from the illicit market.

The fear became twofold when a pulmonologist told her that smoking cannabis may be fatal in conjunction with sarcoidosis.

“I was able to find some marijuana, ground it up, heated up some olive oil, and let it release the medicine into the oil,” she explained. “I had no choice but to ingest, since the pulmonologist warned me of smoking.”

That night she mixed one teaspoon of the oil with applesauce one hour before bedtime.

“I remember feeling scared,” she admitted. “Keep in mind, I was 57, and the only time I ever tried marijuana prior was in college – I had smoked it and remember hating the sensation. I did not want to be out of control of my body like that ever again.”

She had warned her husband to keep an eye on her during that first night of ingesting the oil, but after getting into bed, she closed her eyes and before she knew it, it was morning.

“I slept through the night – never waking up once!” she shared. “I woke up refreshed, not groggy, and was ready to take on life again. I did not feel any high or stoned sensation like you would guess would happen, and learned quickly that pain does not react the same way to cannabis as someone who uses it for recreational reasons.”

Reason being, brain receptors connect with the beneficial compounds of the plant, specifically the terpenes and cannabinoids, providing relief – not an acute head high to the patient as is commonly reported by chronic patients helped with the plant.

After that first night of relief she and her husband set out to grow their own, as Rhode Island was legal for cannabis as medicine.

As of this writing, Smith is in her 71st year of life – more than thirty years past her predicted life expectancy with the illnesses. She’s become a cannabis advocate, as co-director for cannabis advocacy for the U.S. Pain Foundation, and a caregiver as a calling to help others.

“My conditions aren’t cured, they are managed by cannabis,” she concluded. “I tell people not to be afraid. Turn your life and your body around and you won’t regret it!”

Ellen’s Cannabis Oil

10 T. of ground plant material per 1 c. olive oil

Heat olive oil (or oil of choice) to warm, not burn

Simmer for about an hour w/out boiling, as too much heat will damage compounds

Allow to cool, strain, store in glass container in cool cupboard

Note: Smith also suggests using an infusing appliance, such as the Magical Butter Machine. The Magical Butter Machine can make a maximum batch of one liter of oil, using up to one cup of plant material, taking one hour to cook on a low temperature of 130 degrees fahrenheit, or about 54 degrees celsius. A crock pot can also be used to infuse oils, with a cooking time on low of between three to four hours.

Daily Dosing: Start low, go slow. Smith suggests starting with ¼ t. oil, an hour before bedtime. If you wake up not groggy but have not slept the night then each night add another 1/4 tsp. The goal is to sleep the night and not wake up groggy It’s easier to add more than to go backwards and have a bad experience.

Too much THC too soon is the number one challenge for most patients. Reaching your therapeutic dose without negative side effects is the correct way to get used to the psychoactive compound.

To counteract what may be too large a dose, triple-bag a cup of strong chamomile tea to take the edge off and induce sleep. Sleeping off a non-therapeutic dose is the best way to get through it. The THC will affect the central nervous system, not the cardio system, – though it may feel that way.

Author’s note: Cannabis also infuses into olive oil without heat. Heat activates the psychoactive effects of THC. To do a cold-steep, add ground plant material to olive oil (I use ¼ c. ground to one liter of oil) Let steep in a cool cupboard, strain and decant. If the container is put in a warm spot, the THC will activate. 

For more recipes, visit Sharon’s website, www.sharonletts.com/apothecary

Follow Sharon Letts on Facebook, LinkedIn, Instagram @sharoneletts Twitter @sharonletts 

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