Many new approaches to Lennox-Gastaut Syndrome (LGS) treatment have emerged in recent years. While there is still no cure for this condition, people affected by LGS now have more treatment options to choose from. Prognosis for LGS varies from one patient to another, though complete recovery from seizures and other developmental complications is very rare.
A lot more research is needed in this area to design better therapies for the various types of LGS. Advances in detection and recording of seizures are the need of the hour. Treatments and services that aim at improving safety and quality of life for children affected by LGS is another area of focus for researchers.
Organizations Supporting LGS
Several non-profit support and advocacy groups across the US and other countries help in bringing together patients, caregivers, researchers, and healthcare professionals. These organizations work towards raising awareness about the condition and providing support to the patients and caregivers.
They are also the driving force behind research focusing on better treatment methods and potential cures for the condition. Many of these groups comprise doctors and medical experts.
Some of the key organizations supporting this condition include:
- The Epilepsy Foundation
- International Foundation for CDKL5 Research
- LGS Foundation
- Intractable Childhood Epilepsy Alliance (ICE)
- American Epilepsy Society
- CURE: Citizens United for Research in Epilepsy
- Genetic and Rare Diseases (GARD) Information Center
- National Institute of Health (NIH)/National Institute of Neurological Disorders and Stroke (NINDS)
National Institute of Neurological Disorders and Stroke
NINDS conducts, as well as supports, a wide range of basic and clinical research programs on epilepsy including LGS. The key objectives of these research studies are identifying causes of LGS and other related disorders, enhancing diagnostic methods, and developing new therapies and medications.
LGS Foundation
The LGS Foundation focuses on improving the quality of life of individuals with LGS. This is achieved through education and research programs. Years of research by physicians and scientists have contributed to the modern understanding of LGS and improved treatment options and quality of life of people affected by the condition. However, there is still a huge amount of research to be done. LGS is often considered a tough condition to study due to its heterogeneity and the LGS Foundation plays a key role in advancing research in this area.
Research on the Effects of Medical Marijuana on LGS
Several scientific studies on the effect of medical marijuana on LGS have concluded that cannabidiol, a cannabinoid present in cannabis, is a promising treatment option that is capable of reducing or eliminating seizures. One preclinical trial conducted in 2013 showed that cannabis administration caused significant anticonvulsant effects in rats and mice.
Studies show that cannabidiol has peculiar effects on the endocannabinoid system of the body, which helps in the reduction or elimination of seizures. It activates the cannabinoid receptor 1 (CB1), which inhibits the release of neurotransmitter thus causing an overall reduction in excitability of neurons.
Although placebo-controlled studies on effects of cannabis on LGS are currently unavailable, basic research shows that cannabis is very effective in treating epilepsy related conditions such as LGS in children.
In a questionnaire-based study, 84% of participants reported a reduction in frequency of seizures post treatment with cannabis. Out of the 84%, approximately 11% of the participants reported complete freedom from seizures and 42% reported over 80% decrease in seizure frequency.
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