MdDS Australia Quality of Life Survey
In June 2016, members of MdDS Australia were invited to participate in an anonymous online survey investigating their quality of life in regards to general health status; work and social activities; depression and fatigue; life enjoyment; and MdDS inference in daily activities. Sixty-three members (73% response rate) completed the survey over the four-week period.
Average age of the respondents was 41 years, with 96% of the respondents being female. Time of onset to official MdDS diagnosis was 2 years. The general health of respondents was fair to good but there was noticeable response regarding the future of their health status in the future. MdDS has a notable effect on activities of daily living, and also the work environment (including housework), where many respondents noted that they have modified their working hours/load to accommodate MdDS. There was almost unanimous agreement that there is significant ignorance or misunderstanding of MdDS by clinicians and allied health workers. Also, the lack of understanding of MdDS in the wider community may also play an effect on the working environment for respondents.
Overall, this preliminary survey has found that the multiple variables of ignorance/misunderstanding, modification of the working environment (including housework), and being unsure of the future, collectively contribute to constant anxiety and worry about MdDS which is likely to have an affect on cognitive abilities and the mental health of a majority of respondents. Future research should look at creating an individual quality of life score to understand how MdDS affects each person specifically.
To read the full report, please click on the link below.
Mal de Debarquement Syndrome: a survey on subtypes, misdiagnoses, onset and associated psychological features by Dr Cherylea Browne, Neuroscientist and MdDS patient
The most common form of MdDS is motion triggered (MT). However, recently it has been acknowledged that some patients develop typical MdDS symptoms without an apparent motion trigger. These cases are identified here as spontaneous or other onset (SO) MdDS. This study aimed to address similarities and differences between the MdDS subtypes.
The results can be viewed at the link below
Mal de Debarquement Syndrome: A Retrospective Online Questionnaire on the Influences of Gonadal Hormones in Relation to Onset and Symptom Fluctuation.
Retrospective online surveys were performed in 370 MdDS patients from both onset groups. Data were analyzed using Fisher’s exact test or Fisher-Freeman-Hanlon exact test. When possible, data were compared with normative statistical data from the wider literature.
The results can be viewed in the link below