Elaine’s Story of Remission, Compassion and Advocacy MdDS Foundation 12:35 pm Faces of MdDS 3.19.2013 Elaine’s Story of Remission, Compassion and Advocacy My name is Elaine Schlissel. I am 65 years old and I live in Atlanta, Georgia. In June 2010, a cruise changed my life.The cruise was a long anticipated celebration of our 40th wedding anniversary. We had a wonderful time, until shortly after the ship docked at our final port. I sensed that the boat was still […] Read More
Global Genes Project Features MdDS Patient Story MdDS Foundation 12:46 pm Raising Awareness, Faces of MdDS 11.19.2012 Global Genes Project Features MdDS Patient Story Although the role of genetics is not yet understood, the Global Genes Project joins the MdDS Foundation in advocating for those suffering with MdDS. They’ve published the story of Mike Nelson. Rare among the rare, Mike is one of our growing number of male members. You can read his story here: http://globalgenes.org/rare-disease-mal-de-debarquement-syndrome-often-affects-quality-of-life/ Read More
Jeri Hilderley’s Story of MdDS MdDS Foundation 8:44 pm Faces of MdDS 6.20.2012 Jeri Hilderley’s Story of MdDS My Mal de Débarquement Syndrome was set off by an eight-day sailing trip in 2006, during which I was part of the crew. The sailing trip was wonderful and I experienced no motion problems on the boat. However, it is six years later and I am still rocking, as if I never got off that […] Read More
Sylvie Bartels’ Story of MdDS MdDS Foundation 3:21 pm Faces of MdDS 3.15.2012 Sylvie Bartels’ Story of MdDS After many years of suffering from MdDS, which was acquired after a horseback ride and associated with severe TMJ pain, Sylvie feels she is finally able to enjoy life again — all because of the vestibular therapy that she still incorporates into her life on a daily basis.LONG POST WARNING: If you have MdDS and […] Read More
I met another 1-in-10 today! MdDS Foundation 2:50 pm Faces of MdDS 3.7.2012 I met another 1-in-10 today! February 29, 2012 – Sitting in a business meeting, I casually mentioned that it was Rare Disease Day and a woman raised her hand proudly and said, “I have a rare disease!” I shouldn’t have been surprised, but I was.Having an orphan disease like MdDS, we so often feel isolated, and it seems like there’s […] Read More
