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Everyone is different and MdDS certainly is no different. Personal situations, ability to get the correct diagnosis varies across the world, and we all need to start making our waves (sorry) and be heard!!! ~Jo

How did you feel when you found a community of others like you?

I fought it for so many months… What is it? Why me? How to I get rid of it? … all it did was fuel MdDS AKA The Beast. Acknowledging my own symptoms before a health care professional and finding the support group helped me to accept my condition.

What has been the hardest part of having MdDS?

Not being kind to myself… probably the worst possible thing I could have done. I wish I had considered counseling to reduce my anxiety and stress in the early months.

How have things gotten better?

Living in the UK, I often find my flairs ups can be related to weather, especially drops in pressure and windy days, and work-related. But understanding that these feed The Beast, I accept I’ll feel bad for a short period of time, and things will improve. I’m not on any medication and walk constantly in very flat trainers as I find cushioning does not help at all. I self help myself by doing daily yoga for 10 to 30 minutes, to help relax my mind and body. I’m not always in a good place mentally but I feel my core is getting stronger, and I feel my symptoms are manageable (although for several weeks my symptoms have been higher).

What personal message do you want to share?

I spent six months almost grieving for my old self. I was very down and read every post and article I possibly could, to see if I could find a cure. Reality for me was once I stopped fighting The Beast and allowed myself some TLC, my symptoms definitely decreased.

P.S.: I’ve gone back on a cruise and had two amazing normal weeks and, if anything, my symptoms were lower than from cruise one and I am looking forward to number three soon.

Jo, motion-triggered (cruise, 2022)
Age at onset: 50s

Now, let’s talk about the ZEBRA in the room. Did you know that Mal de Débarquement Syndrome is a “zebra diagnosis”? The zebra is the mascot for rare diseases and disorders, and MdDS is just one of over 7,000! No doctor can be familiar with them all, so the MdDS Foundation works hard to bring MdDS to the forefront. You can help by giving educational material to your health care providers (from your PT to your dentist), travel agents, local schools and universities, wherever you see fit. Click or Tap the button below to Get MdDS Brochures and Knowledge Cards.