Cannabis Patient Care - August 2021


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18 cannabis patient care | vol. 2 no. 2 patient focus Two Stories of Lives Lived by Keeping Epilepsy at Bay: Cannabis Was the Key Discovery That Freed These Patients From the Pain and Suffering of an Ancient Incurable Disease B Y D A V I D H O D E S E PILEPSY HAS CHALLENGED mainstream medicine since it was first observed thousands of years ago. One of the oldest Babylonian medical texts, Sakikku (English translation: "All Diseases"), dating from around 1050 BC, includes the reportedly oldest written account of epilepsy (1). Since then, researchers have discovered that it may be in- herited. For example, if a person has a first-degree relative (mother, father, sibling) with epilepsy, the risk of developing epilepsy by the age of 40 is less than 1 in 20 (2). But the likelihood of inheriting epilepsy may differ signifi- cantly if a person has a relative with a known genetic epilepsy diagnosis. In this case, the chance of developing epilepsy de- pends on the specific gene and inheritance pattern involved. Certain types of epilepsy are associated with specific genet- ic changes, including changes in an individual gene or chang- es in a chromosome. Researchers have discovered that people with a clinical diagnosis of Dravet Syndrome, one of the more rare forms of epilepsy that is drug resistant (3), are likely to have a variant in a gene called SCN1A (4). Usually, the variant in SCN1A is a de novo variant, meaning that the variant arose in either the egg or the sperm cell and the parents do not have the SCN1A variant. The first few epilepsy-related genes were identified in the late 1990s. Advances in DNA sequencing now have identified hundreds of genes that play a role in epilepsy; new genes are being identified on a regular basis, some of which are specific to epilepsy. Still Clouded in Mystery But medical science is still stumped about the real origins of epilepsy, and still experimenting with treatments that are gen- erally based in pharmaceuticals. Researchers are just beginning to learn about specif- ic genes and the types of epilepsy associated with them. In many instances, it may be hard to predict an individual's epi- lepsy prognosis because more research is needed, according to the Epilepsy Foundation (5). Today, using cannabis to treat epilepsy has moved to the top of the list of options. There is a growing batch of data and anecdotal accounts that shows it works. In fact, treating epi- lepsy with cannabis is quickly becoming the go-to choice for Two medical cannabis patients share their stories about choosing cannabis for treatment: Vanessa Jones, suffering from epilepsy all her life that has finally begun to subside; and Deborah McCauley, a registered nurse with a background in mainstream medicine who is also facing her own challenges with epilepsy. Jones talks about the initial treatments doctors recommended that didn't work, and why cannabis allowed her "to have some control of my epilepsy, regain my autonomy, and provide me a significantly greater quality of life." McCauley's path to cannabis began as a medical mainstream insider who gained more insight as she changed the treatment for her seizures from the usual pharmaceutical regimen to cannabis—while facing backlash from the medical community. "I have to say it still amazes me that the existence of an entire body system, our endocannabinoid system, is negated by the stigma of a plant," McCauley said. "It's still so fascinating for me to see people argue against the science that is very clearly available."

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