Cannabis is medicine, says one Naples mom determined to change the stigma and public perception through education. So adamant in her mission, Shannon Livingston quit her job to establish a nonprofit dedicated to helping patients – and parents – learn more about medical marijuana.
Medical Marijuana
“The process of not just accessing cannabis but then learning how to use it in a medical way is very overwhelming,” explained Shannon Livingston, co-founder of The Livingston Foundation. And it’s not right for every patient, she added. But that shouldn’t prevent parents from learning more on the subject.
“My hope is that through education, we can get to a point where cannabis is the first-line treatment, not the last resort,” Livingston said. Especially as more conditions are added to the list that allow you to qualify for a medical card.
Livingston knows first-hand about the stigma associated with using marijuana. She willingly talks about how she self-medicated with cannabis for more than 20 years after a breast implant ruptured and contaminated her system with microorganisms. “Infection took over my whole body,” she said, of what first led her to cannabis. “I developed an autoimmune disorder that causes your skin and mucus membrane to blister and disintegrate.”
At the time, she was a single mom living in Kansas City, Mo., and doctors prescribed some 17 different medications to fight the symptoms. But those meds left her unable to care properly for her young son. Her brother offered an alternative: Livingston should self-medicate by smoking weed. “It made a big difference to me,” she recalled, of that initial experience. “But I couldn’t talk about it. ... I was just smoking. I didn’t know any other way to do it.”
Eventually, Livingston went to Colorado and discovered cannabidiol (CBD), which is one of the active ingredients in cannabis, and its medicinal benefits. But unlike the product her brother introduced her to, CBD doesn’t get you “high” like the psychoactive ingredient TCH (Tetrahydro-
cannabinol) does. After taking a CBD oil, she felt like her old self. Gone were all the nasty drug side effects. “The nausea, fatigue, migraines; everything weird that came along with being sick had vanished – and there was no trade-off,” Livingston said of first taking CBD. “I had to learn why this oil was working.” She vowed to learn all she could.
Livingston calls herself autodidactic, after attending numerous seminars, symposiums, conferences, and classes as well as attending Oaksterdam University (self- described as America’s first cannabis university located in Oakland, Calif.) in her pursuit to learn more about cannabis. But she readily admits there is no educational standard in cannabis. “Nothing makes me an expert.”
Along the way, Livingston has met other patients as well as parents of patients. She points to one little girl who helped changed the cannabis-is-medicine narrative: Charlotte Figi. Featured in the CNN four-part docuseries, “Weed,” viewers see the child go from catatonic to walking, talking, and playing like her healthy twin, Chase. Diagnosed with Dravet Syndrome (a severe type of epilepsy with seizures), Charlotte suffered from some 300 seizures a week before she began taking a strain of cannabis that has a low level of THC but is really high in CBD. That strain was named Charlotte’s Web after the then five-year-old patient. “People learned Charlotte’s Web instead of marijuana. It’s kid-friendly; we all are familiar with the book,” Livingston said.
Another child was Gavin Lawrey, who suffers from mitochondrial disease, a con- dition that prevents cells in his body from getting enough oxygen so they die off. The Livingston Foundation produced a public service announcement featuring the boy that aired just before the Amendment 2 vote in Florida. “Gavin explains what cannabis is and what his medicine does,” Livingston said. “That little boy is alive because of can- nabis. His doctors and his parents absolutely agree.” Gavin’s mother, Brandi Lawrey, now serves as the foundation’s vice president.
Deciding on the Registry
When a patient in Florida is diagnosed with a qualifying condition for medical marijuana, the physician enters the order into the Medical Marijuana Use Registry on the Florida Department of Health website. After the order is entered, the patient applies for a Medical Marijuana Use Registry Identification Card. While medical marijuana is available in Florida, it remains illegal under federal law.
Deciding if the Medical Marijuana Use Registry is the right fit for the patient and the family is difficult, Livingston recognizes. She has learned to educate the whole family together, and when a family has questions – regardless of who is the patient, parent or child – that typically involves a discussion in the family’s living room over a pizza. “It’s education one-on-one ... and confidential,” she stressed, of the foundation’s approach. “Because cannabis is newly available, it’s important, especially for kids, to understand that this medicine is called cannabis or medical marijuana, but it’s not what they learned about in school.”
Despite this, some families still choose not to remain in the registry even when it’s effective medically. “They felt there was too much stigma. They didn’t want their friends finding out,” she said. That goes for children, too. Both as a patient and as a child of a patient. But Livingston wants potential patients to understand: our health information is HIPAA-protected. “We don’t go to school [and say] ‘Mommy’s taking her Xanax.’ We don’t have that conversation. It’s up to you whether you want to discuss your health or not.”
Livingston does encourage individuals and their caretakers to share their story, especially if it is a positive experience. “When someone you know and trust has a story [about using medical marijuana], that’s when hearts and minds open to facts and figures,” she stated. “I can’t walk up to someone who is anti-medical cannabis and change their mind with a 20-minute conversation. But if their granddaughter goes from 20 seizures a day to having none after taking cannabis, then they are Googling it and are open to it.”
While those stories – even Charlotte’s – may seem anecdotal to some, Livingston wants everyone to have medical choice. Her foundation helps connect those already in the registry to someone considering entering it. Parents may not be ready to jump into a doctor’s appointment for their child and just want a safe environment to have their questions answered. “Responsible parents should have a lot of questions,” explained Livingston. “Any big decision should be well thought out, well researched and we try to help with that.”
What is CBD Oil?
Cannabidiol (CBD) has gained in popularity and is sold legally at many retail outlets throughout SWFL and in 30 other states. CBD can be ex- tracted from both hemp and cannabis plants, but CBD hemp oil contains less than 0.3 percent THC (Tetrahydrocannabinol).
CBD oil sold at medical dispensaries in Lee County contains a higher percentage of TCH than those products sold at vape shops, and you need a medical card to purchase it.
Athina Kyritsis, MD, of Green Palms Health & Wellness in Naples, explained that CBD is known to work for a variety of ailments and doesn’t require a doctor’s prescription. “I recommend cannabidiol, or CBD, as a segue into medical marijuana while a patient waits for a state-issued medical marijuana card,” she explained.
While these products are not without controversy, the child’s well-being must be first priority, Kyritsis said. “Unfortunately, backlash will happen and all anyone can do is respectfully educate with correct information,” she added. “The health of a child must come before social acceptance of the treatment.”
For more information, call 239-682- 1812 or visit Livingstonfoundation.org and floridahealth.gov.