Marilyn Josselyn’s MdDS Story

Marilyn and Roger Josselyn, Co-Founders of the MdDS Foundation

In 1998, Marilyn contracted a poorly understood condition of imbalance after a Russian waterways cruise. She had to immediately quit her job due to what was diagnosed as Mal de Débarquement Syndrome or MdDS.

As a result of their experiences in learning about and adjusting to life with MdDS, Marilyn and Roger Josselyn began a crusade to increase awareness about this disorder.  This crusade has grown into the current MdDS Balance Disorder Foundation.  What started as a member base of a few dozen has grown into hundreds worldwide. Thus, there has been great progress finding those who suffer from MdDS, improving knowledge about MdDS, and providing two vibrant Support Groups for those affected by MdDS.

Roger was a retired business manager who picked up on the heels of Stanford PhD candidate, Evan Torrie, after MdDS caused Evan to abandon his pioneering website dedicated to the disorder. Marilyn and Roger met with Sue Barnes and decided to pursue internet (website) development. They initially shunned the complexities of forming an independent non-profit organization in favor of gaining immediate benefits under the umbrella of the National Heritage Foundation (NHF). These benefits included not only status as a tax exempt organization that functioned under the oversight of the NHF, but, also a website opportunity provided by the NHF.  The latter established the first internet presence of the fledgling Foundation.  However, because of changes in US tax laws regarding non-profit entities, it became necessary to transition into independent status.  Thus, by January of 2007, Roger was able to complete the complexities of filing the necessary paperwork to become an independent 501(c)(3), subject to the usual state and federal regulations.

The initial goal of the Foundation was to harness research directed towards effective treatments and a cure for MdDS.  However, the lack of specific tests to diagnose MdDS redirected Foundation efforts to solicit additional volunteers who were willing and able to “spread the word”. In 2003, the Foundation established an internet-based MdDS Support Group for those suffering from MdDS, and their families, who needed to know what they suffered from. Expanded efforts were directed towards educating health care providers. Initial publicity was through local newspapers and an occasional reference in professional articles. The Foundation created and distributed an informative brochure. These early efforts were assisted by VEDA (Vestibular Disorder Association) and NORD (National Organization of Rare Diseases), the latter having listed the Foundation through the National Institutes of Health (NIH). The Foundation then gained the support of a five member Advisory Council of physicians and garnered  international attention through the efforts of volunteers. Subsequently, the Foundation was fundamental in efforts to have MdDS listed as an index item under ICD-9-CM code 780.4, “Diagnosis, Dizziness & Giddiness Syndromes”. Since 2006, the Foundation has sponsored a newsletter that is routinely sent to a growing number of medical professionals; this effort has gained significant attention through the publication of survey findings from the 600+ members of the MdDS Support Group. Several members participated in tests with two forms of tactile brain retraining devices. And, a “severity scale” was published to aid in quantifying the extent to which members were impaired by the disorder. In 2007, national press and TV coverage of MdDS allowed large numbers of those suffering from misdiagnoses to identify their disorder and join the MdDS Support Group; the gratitude in “finding I am not crazy” was overwhelming.

Since 2006, the Foundation has directed attention to medical professionals through attendance at the annual conventions of selected medical specialties.  In 2006 and 2007, the Foundation hosted a booth at the annual meeting of the  American Academy of Otolaryngology – Head and Neck Surgery Foundation (AAO-HNSF), also known as the OTO EXPO. Recently, the Foundation was represented at the 2008 annual meeting of the American Academy of Neurology (AAN).  While many professionals had diagnosed “a few” of their patients with MdDS, the predominant query was “how can I treat it?”.

At the end of 2007, Roger stepped down from his position as the leader of the Board of the MdDS Balance Disorder Foundation. Marilyn continues in her role as a member of the Board. The new Board includes more key players than before and offers great promise of the first real steps toward MdDS research. Although the Josselyns and Foundational efforts have made the medical profession more aware of this widely misdiagnosed disorder, much remains to be done so that someone can walk into her/his family doctor and be promptly diagnosed with MdDS.