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Cara-Louise's Story

My name is Cara-Louise and this year I was finally diagnosed with Mal De Debarquement Syndrome (MdDS) after five years of waiting.

 

In 2011 my symptoms first appeared, at the time I was in year 11 at school in Queensland. The first of many strange indicators that something might be wrong came when I started feeling ‘dizzy’ getting up out of bed in the mornings. As time went on I started not wanting to go to school because I felt so unwell, even just standing still would cause me to lose my balance. This made some people believe that I might have a mental health condition, but that was not the case. Over the next couple of years my illness became worse, I started to become extremely unbalanced, I constantly felt as though I was rocking, like the feeling you get when you are sea sick. I was nauseous 24 hours a day, and throwing up all the time, and on top of it all I had migraines at least once a week. These were just a few of the many symptoms happening to me. It was only this year that I finally got diagnosed with chronic migraines and MdDS.

 

MdDS is a rare and little understood disorder of the body’s balance system (vestibular system) and refers to the rocking sensation and sense of imbalance that persists for an excessive length of time. A diagnosis of MdDS is often delayed and misdiagnosed. When I became pregnant with my son Kayden, my illness only became worse. After Kayden was born I hoped my illness would improve somewhat, but if anything I have only deteriorated further. Now it is extremely hard to manage my symptoms. At this point I am not sure what could be done to help me, as currently there is no effective method known for curing MdDS. More options are needed for treating patients like myself with this rare disorder.