Benjamin Barnes, MD, Augusta University, discusses how he approaches ALS patient conversations and an ongoing platform trial.

 

 

Amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig’s disease, is a motor neuron disease which leads to problems with muscle control and movement. There are various types of ALS that are distinguished by symptoms and, in some cases, genetic cause. Early symptoms may include:

  • Muscle twitching
  • Cramping
  • Stiffness
  • Weakness
  • Slurred speech
  • Difficulty chewing or swallowing

 

As the disease progresses, people may become weaker and are eventually wheelchair-dependent. Most people with ALS have a sporadic, as opposed to inherited, form of ALS. It is believed that these cases are caused by an interaction between genetic and environmental factors. 

As Dr. Barnes describes, approaching patient discussions about their diagnosis requires empathy and a hopeful perspective. A focus on what can be done in terms of treatments and enrolling in clinical trials are key in effective conversations. Finding advocacy groups may also benefit patients with a diagnosis such as ALS.

Currently in the ALS landscape, a platform trial testing multiple medicines is ongoing in hopes of advancing treatment options for the disease. For more information, visit https://www.massgeneral.org/neurology/als/research/platform-trial.

 

To learn more about ALS and other rare neurological diseases, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/