Q: What impact do you hope your story makes?
A: I hope my story can be an inspiration to continue on the path of balancing darkness and light, disability and stability.
Q: How did you feel when you found a community of others like you?
A: After researching my symptoms and looking into what Google said I might have, I searched Facebook and came upon the MdDS support group, MdDS Friends. After joining, I read a lot of the testimonials and I encourage others to do the same. Searching through the messages, I knew I had found a community of people who knew what I was feeling, even offering suggestions for relief. Now that I’ve lived with the disorder a few years, I try to be a light for those who are new to MdDS and give reasonable advice as well.
Q: What has been the hardest part of having MdDS?
A: I have been to several physicians and therapists. Most have never heard of Mal de Debarquement Syndrome and can not help. It’s frustrating because you are looked upon like a person who has a mental health problem rather than a neurological condition. It’s very sad to have to share your story over and over, to physician after physician, and walk away with no relief. Stress makes the symptoms worsen. Imagine leaving the doctor’s office un-healed, un-happy and un-able.
Q: How have things gotten better?
A: Have things gotten better? No, but you learn how to live and keep stability in your life, to cope. Life as I knew it has changed. It’s forever altered. But I’m evolving. I etch out light for hope and strive to live life at least resembling the good old days. I’m not Dawn yet!
Q: What personal message do you want to share?
A: I want people to keep pressing their physicians, to request funding for research for a cure. I want people to do what they can to find light in the darkness. It’s not uncommon for us to have to live our life with little to low light – but if we keep some light for hope – we can get through this.
Dawn McGhee from Dallas, TX
Motion-triggered
Age at onset: 40s
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Thank you for sharing. Feeling along, in front of doctors, is something so many of us are challenged with it it’s refreshing to not feel alone.
I know accessing the standardised treatment for MdDS isn’t easy in some countries but hats off to these researchers all the same:
https://doi.org/10.3389/fneur.2024.1359116