“I was built for comfort, not for speed.” Invisible diseases can be just as hard to acknowledge and understand for the person experiencing as they are for those around them.

In this episode we talk with Romy about her big ideas for how to share the realities, and awareness of, Rare Diseases with the general population. Her goal is to reach the masses and she is using her experience and her passion in driving that mission. Romy also opens up about her own lack of awareness and understanding the disease that was shaping her life and what resources were available to her had she been given more information by her doctors in the beginning.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS. Wherever you are on your journey—searching for the right doctor, the right diagnosis, or the right treatment—this site can guide you to that next milestone.