Lambert-Eaton Myasthenic Syndrome (LES)

          101  words you will start to hear, This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now have treatment options that are proven to be effective for LEMS. In June, I was asked to be a columnist for  Lambert-Eaton News  and “ LEMme Tell Ya ” was born. I never imagined writing a weekly column about my disease. In addition to my column,  Lambert-Eaton News  publishes updated information multiple times a week for LEMS patients, their families, and providers. There was little to no information about LEMS when I was diagnosed in 2016, and now there is a weekly newsletter! As we wrap up 2019,  Lambert-Eaton News  is taking patient information one step further by launching the  Lambert-Eaton News Forums . The soft launch is this week! He

How-much-will-a-pack-of-joints-cost-the-future-of-mass-market-marijuana? Marijuana is for sale in Colorado and Washington, so it's seemingly only a matter of time before packs of joints are available as well — but how much will a pack run you? After doing some extensive research,  Fast Company 's   Thor Benson came up with around $50. He reached that number by comparing the estimated cost of marijuana production (about $2 to $3 per gram) with common industry margins (rumored to be between 40 percent and 50 percent) and factoring in the economies of scale wielded by large companies like Marlboro. At the very most, an average pack of joints might run you about $120 — the amount Denver-based store Medicine Man asks for a 20-pack of pre-rolled, one-gram joints. Benson even sought input from Jeff Caldwell, a representative from Marlboro's parent company, but Caldwell wouldn't speculate on the potential costs of joint packs. Caldwell said that his company had "no plans t

 On COVID-19: And LEMS Cancer patients and caregivers share their current life realities.   “I feel overwhelmed with uncertainty, fear, shock, worry, anxiety, sadness, and grief – similar to how I felt when I found out about my daughter’s cancer diagnosis.” This honest response to the influx of news and conversations surrounding the coronavirus outbreak comes from Joan, whose daughter Sarah is currently in maintenance care for optical glioma bilateral. What’s more, Joan is temporarily out of work because of the ongoing crisis, yet another similarity to when she left her job to be by Sarah’s side during treatment. From emotional distress to temporary losses in income, the parallels between living with cancer and navigating this global pandemic are undeniable. COVID-19 is also taking an especially harsh toll on those who are already vulnerable, and we recognize that the financial barriers and health concerns of cancer are only compounded by the spread of the virus. Cancer won’t press pau

  How Patients with Cancer, and Survivors, Can Manage Stress Through COVID-19 Uncertainty.   The recent and rapidly evolving developments surrounding the novel coronavirus — also known as COVID-19 – has led to significant uncertainties around the world. Those unknowns have led to panic and have subsequently increased the anxiety and stress some may be feeling, particularly those who have survived cancer or are currently in treatment. “Fear is a natural human emotion. We all have fear during this pandemic, yet the higher risk for health complications from COVID-19 may heighten the stress faced by individuals with cancer. We all need to focus on actions we can take to reduce our risk of contracting the virus, such as social distancing. We can also take practical steps to cope adaptively with chronic stress because the fear is probably not going away anytime soon,” Dr. Shelley Johns, a researcher with the Indiana University Melvin and Bren Simon Comprehensive Cancer Center, said in an int