Raising MdDS Awareness: Brandy’s Story

 

Mal de débarquement, or “sickness of disembarkment,” is a phenomenon which causes a bobbing, rocking, or swaying sensation, alongside other symptoms. With many people, mal de débarquement only lasts for a short period. But for Brandy de Blois, whose symptoms are sustained over long periods, the condition is known as mal de débarquement syndrome (MdDS).

In Bay Today, Brandy laid out exactly what it means to have MdDS, her experience with diagnosis and symptoms, and how she has worked to raise awareness on a local – and larger – scale during June, which is MdDS Awareness Month. Additionally, Brandy discusses how she has found and facilitated community support in the helpful Facebook group Mal de Débarquement Syndrome – MdDS Friends. Interested in joining this community of over 5,400 supportive members? Head over here.

Brandy’s Story

In Brandy’s blog post for the MdDS Foundation, she explains that her symptoms initially began in 2012. She writes that it wasn’t quite dizziness she felt, but:

A constant feeling that I’m in motion. A feeling of being drunk that never goes away.

Of course, having trouble describing symptoms can make it more difficult to receive an accurate diagnosis. An additional issue which complicates the diagnostic process is the widespread belief that MdDS appears solely after being on a cruise. In Brandy’s case, she believes that her initial trigger was playing Nintendo Wii with her children. Because of this misconception, doctors may under-diagnose or misdiagnose MdDS. Altogether, it took 3 years for Brandy to receive an MdDS diagnosis from Mount Sinai.

What is MdDS?

As described by the MdDS Association, MdDS is:

a neurological disorder of perceived movement manifesting as a constant feeling of rocking, bobbing, or swaying which seems to be alleviated in passive motion such as riding in a car. MdDS most often develops following a cruise or other type of water travel…[but] has also been reported following air, train, and automobile travel; and less commonly after repeated elevator use, walking on docks, from the use of virtual reality equipment, or practically any motion experience.

MdDS is most often found in adult women between ages 30-65. Typically, symptoms can last anywhere from a few months to years. Additionally, after the initial symptom onset, there is a high likelihood that symptoms will reappear or recur. Symptoms often begin following the stop of the initial stimulus (for example, after getting off of a boat or off of an airplane). Further, symptoms often worsen when someone is attempting to be motionless. Outside of the feeling of motion (bobbing, rocking, swaying), additional MdDS symptoms include:

  • Fatigue or lethargy
  • Anxiety and depression
  • Blurred vision
  • Poor balance and coordination
  • Difficulty concentrating
  • Unsteadiness
  • Staggering gait

Living with MdDS

Shopping, showering, vacuuming, and even washing dishes spark her symptoms and cause unsteadiness. Brandy has learned to adapt while walking or moving: holding onto objects, nudging something with her shoulder or hips to:

tell my brain…that I’m not falling, the room isn’t floating or bobbing, and neither am I.

She also has trekking poles to use on particularly tough days. At one point, Brandy underwent five months of remission, which she spent walking dogs at the Humane Society, watching movies and shows with her family, and sitting, standing, or lying down without symptoms. However, her symptoms eventually returned. Now, the only place Brandy’s symptoms disappear is while she drives. Read more about Brandy’s story on the MdDS Foundation blog.

Building a Community

Patients with MdDS often see upwards of 20 doctors before receiving a diagnosis. By raising awareness, Brandy hopes to fight isolation and assist even one person who heard her story and felt like the symptoms or situations were familiar.

In part, she does this as an administrator for the Mal de Débarquement Syndrome – MdDS Friends Facebook group. Being able to find emotional and mental support has been helpful for many group members. She explains:

Most…have been previously misdiagnosed and finally have the proper diagnosis and one of the first things [they] say is, ‘I was told this was all in my head for so long!’

If you have been diagnosed with MdDS, or are curious about your symptoms, join the Facebook group or reach out to the MdDS Foundation for assistance.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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