Vestibular Community Survey

Posted by Cynthia Ryan

VeDA asked patients to share information about their symptoms and VeDA's role in supporting the vestibular community.

Here are some of the key findings:

  • Almost half took over a year to get correctly diagnosed.
  • When asked to rate their symptoms on a scale of 0-10, with 10 being extreme and zero being non-existant, 85% rated "dizziness" five or above.
  • 87% rated "imbalance" five or above.
  • 79% rated "vertigo" five or above.
  • 76% rated "brain fog" five or above.
  • 62% rated "nausea" five or above.
  • 44% rated "falling" five or above.
  • The top diagnoses reported were: 1) Meniere's disease, 2) "unknown" and 3) BPPV/vestibular migraine (tied).
  • When looking for information online, most patients searched by the name of their symptom, and most found VeDA through a Google or other online search (compared to social media or through a doctor/friend referral).
  • Most respondents found VeDA when they were already diagnosed.
  • When asked what areas of advocacy VeDA should focus on, most rated "quicker diagnosis" and "improving treatment outcomes" as most important.
  • When asked which of the following is most important to you, respondents said (ranked in order of importance): 1) finding the right vestibular specialist, 2) having access to a wealth of science-based information about MY specific vestibular condition, 3) having a basic understanding of MY vestibular condition, 4) having access to a wealth of understanding around all vestibular disorders, 5) engaging with other patients who have the same or similar condition, 6) being part of a movement to raise awareness for vestibular disorders, and 7) having a basic understanding of what "vestibular" means.
  • 35% of respondents visit VeDA's website at least weekly or monthly.
  • Half of the respondents had not heard of Balance Awareness Week.
  • When asked if VeDA has had an impact on the respondent's ability to live with their vestibular disorder, 7% said that VeDA has had a life-changing impact, 24% = significant, 37% = moderate, 23% = minor, and 9% = no impact.

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