More Stories

Meet Board President, Marilyn Josselyn

My husband, Roger, and I had always enjoyed traveling. Paris. Hawaii. Thailand. Another time a trip to Morocco. We owned a timeshare in Cancun, a mere 4-hr flight from home. In 1998, we decided to embark on a different adventure, a special trip, a Russian waterways cruise. Promises of beautiful scenic settings, unforgettable experiences, new […]

Read More

Robert’s Story: Self-Diagnosed 36 yr-old Atlantan

My name is Robert Lupo, and I live in Decatur, Georgia. I am a 36 year old male who has been experiencing Mal de Debarquement for a little over two years. I left a concert on January 1st 2013 and have been experiencing this syndrome ever since. Throughout the first couple months of experiencing it […]

Read More

8 Years After Spontaneous Onset, Alice Experiences a "Miracle"

In early 2005, I started having a “twitching” nerve at the base of my neck. Kaiser Hospital in Roseville, CA, gave me several tests. Yes… the doctors looked at me like I was crazy when I described my symptoms to them (ear “fullness”, etc.) and were no help at all.

Read More

Submit Your MdDS Story

MdDS is an invisible illness but that doesn’t mean you are. Share your experiences with others and tell us your story.

Send a document or include the narrative in an e-mail to connect@mddsfoundation.org. A Board Member will reply to you before it is published. The following guidelines are designed to help you write your story.

Submission Guidelines

Guidelines for Submitting Your “Faces of MdDS” Story

Include only information that you feel would be helpful to professionals or others living with the disorder. For example:

  • Describe the precipitating event(s). Try to be brief so those with visual sensitivity don’t have to scroll too much.
  • Include the length and conditions of the motion experience or the circumstances surrounding a spontaneous onset such as recent childbirth, history of migraines, etc.
  • Explain how you received a diagnosis or lack thereof.
  • Describe treatments that you have tried and how they affected you. Please note that medication dosages will be redacted so the information cannot be misconstrued as medical advice.
  • Describe how MdDS affects your life including your family life, employment, and activities.
  • Include an appropriate picture, whether of yourself or meaningful to the narrative.

Submit Your Story