TSC Talks, USA
Title: Current synopsis: The source: Cannabinoids
Biography:
Jill Woodworth. is a Podcaster. Chronicler of being human. Committed to giving voice to the underdog, the oppressed, those for whom being heard is crucial to survival and quality of life. If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market.
To manage a diagnosis of TSC one must broaden the scope of germ theory. Focusing on individual manifestations without overall integration and oversight of all specialists treating requires solid supports and intricate case management over time to gain any measure of stability, minimize impact of manifestations and maintain overall health. Quality of life is significantly strained and diminished over time in many cases as support networks become more siloed, with all communication between providers implemented by a caregiver. Medications are prescribed by multiple parties with little long-term oversight of cumulative side effects and interactions over time. One must become subservient to the healthcare systems inclusive of behavioral and mental health services, as well as educational settings. The assumption that the professionals from whom we are seeking treatment and support know more about the condition and therefore the key to case management is wrangling experts in specialties and seeking to integrate the most progressive research and treatments, all while holding on to an intense patient history and respectfully bow to the top heavy power structure of modern medicine to guide.
Cannabinoid medicine represents an opportunity to treat more than one manifestation at the same time, reduce pharmaceutical load and put some control back in the hands of the individual and/or parent/caregiver. All family members can benefit from the implementation of personalized cannabinoid medicine and address long term endocannabinoid deficiency syndromes which often start in the womb for those affected with rare diseases. I propose that all diagnosed with TSC be evaluated for ECS deficiency and cannabinoid supplementation be offered as soon as possible to restore balance and address pharma depletion. Nutritional consideration and evaluation need be a part of treatment as well as pharmaceuticals will often deplete/alter nutrient efficacy. Physical exercise also is a way to boost endocannabinoid system efficacy and should be part of a package for all affected by any chronic life-threatening disease. The more anyone can do to improve one’s health independently will improve chances of having some measure of quality of life-long term. Remaining dependent on the healthcare systems of support long term increases risk of developing additional diagnoses, need for more medications and treatments and overall increase in feeling powerless, desperate and living in cycles of despair and grief. Affordability, accessibility, education are all needed when considering cannabinoid and alternative medicine and this is a huge barrier where one’s financial status often precludes many from even considering it as an option. The legal status of cannabis in the US is an ongoing roadblock to integrating cannabinoid and other plant medicine as part of a treatment plan. There are various groups that are straddling traditional medicine and cannabinoid medicine and can help one bridge gaps of care such as green nurses, and doctors who have chosen to work in this space. There is less of a top heavy power structure and the use of cannabinoid medicine requires much patient involvement and education so eventually it is managed solely by individual. There is a learning curve involved and guidance is needed so there are still many challenges left to overcome to even get to the point where more people immersed in traditional med approaches to treatment can begin to integrate even minimal use of cannabinoids.
As soon as there’s a “hit” to the ECS, that may affect homeostasis, there is an escalated risk for each event that follows increase chances that one’s system becomes further dysregulated. For an infant with a diagnosis of TSC, seizures are often the earliest visible manifestation and the first course of action in traditional medicine is to prescribe pharmaceuticals. While this is often necessary, the assumption that continuing pharma as necessary is almost a requirement to be able to work with the traditional medicine. Never is their consideration given to the fact that what we are doing to very young infants with TSC and other similar conditions is making it difficult for the body to ever have a baseline of endocannabinoid homeostasis from which to often are at the mercy of being prescribed multiple pharmaceuticals and sent to multiple specialists, not to mention other branches of medicine and social services needed to manage the different TSC related manifestations. While the miracle of modern medicine has had a profound impact on improving the outcomes of those living with TSC and other chronic conditions, there are some gaping holes in our systems of care in today's society that make it increasingly difficult for those living with or case managing TSC and/or other similar conditions to have any quality of life and stability over time particularly as one gets close to or over the cliff of turning 21 with special needs and scattered, siloed systems of care make case management easily a full time job. Families are bending under the strain, individuals affected feel the burden twice as much as families/caregivers and this is not a sustainable system. Cannabinoid medicine is one tool that can potentially offer at minimum palliative measures such as reduction in depression, anxiety and at best increase seizure control and verbal ability in those with ASD. Epidiolex was recently FDA approved for certain conditions, TSC was among those conditions, but not everyone can wait to get on Epidiolex, or for the marijuana to be legal at the federal level. People can get relief now but there's a lot of misunderstanding of how to use CBD and cannabinoid medicine, distrust of the THC component from years of propaganda, and often condescension toward those who are open about their cannabis use. Through podcast conversations from across the cannabis industry including; doctors, nurses, pharmacists, advocates, growers, educators, etc, we peel back the layers of doubt, fear and seek to educate, highlight those in the industry with wisdom and practical lived experience that are willing to help and offer solutions for those within communities ravaged by chronic conditions such as TSC, where cannabinoid medicine, with some education, can reduce pharmaceutical load. Cannabis can be used for more severe conditions such as epilepsy, Parkinson’s, multiple sclerosis as well as treating many of the mental health and neuropsychiatric issues that go with these multi-organs affected diseases.