Mal de Debarquement Syndrome: A Rare and Often Misdiagnosed Neurological Syndrome

My personal journey with Mal de Debarquement Syndrome (MdDS or disembarkment syndrome) began over eight years 
ago, even though it is supposed to be a “self-limiting” disease.  I have been part of the MdDS Balance Disorder Foundation to help get recognition for this rare and often misdiagnosed neurological syndrome.

The hallmark symptoms
 include a feeling of rocking, swaying, bobbing, or bouncing after a 
passive travel experience that seems to disappear when a person returns to 
motion such as during a ride in the car. There are a host of other
 associated symptoms such as brain fog, fatigue, visual disturbances,
 headaches, insomnia, and loss of balance.

Despite that fact that Charles Darwin’s father writes about these feelings
 in the late 1700’s after boat and stage coach travel, there has been little research. There 
is no know cause and no known cure. Currently, there are a total of two 
researchers who are studying MdDS. There work is, 
in part, supported by direct donations to the MdDS Balance Disorder
 Foundation.

Despite trying many 
medications and therapies, over the last eight years, my MdDS remains much as it was in the
 beginning; the only time I do not feel the motion is when I am in the car 
or asleep. I am barely able to work part-time and some days I cannot take 
care of myself since the rocking motion is so intense, I cannot stand up
 long enough to make a meal or take a shower. Small enclosed places and/or large noisy ones are extremely difficult.

In order for the medical community to acknowledge Mal de Debarquement 
Syndrome, there needs to be education in their training; medical school, 
nursing school, PT and OT training, etc. A well funded research and awareness initiative in every medical school 
around the world would be a great start. Until medical professionals are aware of, 
and understand the detrimental impact MdDS has on one’s life, there 
can be no treatment or cure.

The National Institutes of Health
 (NIH) acknowledges MdDS but does not understand the full negative impact and
 longevity of the disorder. We are aware, the Navy and NASA deal with MdDS but in a
very private manner. If the government were to acknowledge the number of
 cases from these two entities, MdDS would no longer be rare.  We have applied to the cruise lines for
 grant monies to research MdDS which would obviously, be to their benefit.

Currently, there are only two small research studies being done on MdDS, one at Ohio University and one at UCLA. Information about both are
 available on the MdDS Foundation website. The Foundation maintains
 ongoing surveys which collect information about those living with MdDS.
 The results are often published in the Foundation newsletter.

Although it is difficult to maintain hope, I tend to consider that three
 years ago there was no ongoing research into MdDS and there were only a 
few awareness initiatives. A few years ago, my husband and I, along with
 another woman who lives with MdDS appeared on Medical Mysteries with John 
Quinones – it was the first time MdDS or Disembarkment Syndrome had been 
featured on a national level.  

Many more cases of MdDS were identified 
after that coverage, and the Discovery Channel did a segment called “The Woman Who
Could Not Stop Rocking” about another person with MdDS.  

Deb Russo
MdDS Balance Disorder Foundation