Living with Chronic Disease

Being diagnosed with a rare and chronic condition is life changing. In addition to dealing with your health, there are emotional, financial and lifestyle ramifications as well. It is likely that neither your family physician nor your family or friends may understand LEMS or know how to best help you and direct you to the latest information about the very rare condition. The fact that LEMS is accompanied by cancer in 60% of cases only adds to the complexity of treating and managing the disease.  It may seem overwhelming; but you are not alone.


  • There are more than 7,000 identified rare diseases; a rare disease in the U.S. is one affecting fewer than 200,000 people.
  • 30 million people in the U.S. are living with a rare disease; that’s 1 in 10 people.
  • In 2015, it is estimated that 1,658,370 new cases of cancer will be diagnosed.
  • 50 million Americans suffer from autoimmune diseases.
  • It is estimated that 1,200-3,000 individuals in the U.S. have LEMS.

Despite the challenges, LEMS is treatable and you can live a full and rewarding life. Although each individual and disease differs, there are some common tactics that have proven effective in helping patients manage effectively.

At a recent LEMS patient education meeting hosted by Global Genes, Stephanie Gandomi, a genetic counselor who also is a Global Genes advisor, presented the session, Tools for Living with Chronic Illness and you can view the session below.