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The Vestibular Disorders Association - VEDA - is starting
to gear up for Balance Awareness Week in September. As most of you know, I'm on the patient
advisory board, known as the Ambassadors - David Morrill is our terrific
Chairperson. We want this BAW to be
really effective in helping to raise awareness, and educate the public about
these invisible disorders. We also want
to know what YOU - patients or family/friends of patients - are looking for
from BAW.
So I'm asking my readers for input; what you'd look
at/click through, and what you'd be likely to SHARE.
I'll go first :-)
Articles
- I
listen to articles that are either informative (i.e. new research,
explanatory), or realistic but also encouraging. Preferably the info is concise; bullet points
are good, as are headings (especially if it's info rather than a personal
story). It's great when I'm learning
info I couldn't otherwise easily access, especially since due to my vision
disorder, I can't do much research on my own.
I've learned a fair amount re vision, which seems to be
more straightforward than MAV, and I'm always happy to share. Prior to my disorder, I knew and understood
very little about vision, so I like being able to pass on info about the
connection between vision and balance. I think there's still a lot that isn't
known or understood re MAV, but I'd like to know about whatever info IS
available. I'd love to be able to share
more about this with my readers.
Videos
-
I'm also always happy to find well-done, informative videos - I may not
actually WATCH everything in a video, but I learn from listening. Videos are definitely something to share. Videos with music that are motivating and/or
inspiring are always good.
Info
graphics - I'm selective re info graphics - I want well presented
info, that isn't visually confusing. I
would definitely share good ones.
Other
patients - I like to hear from others who suffer from vestibular
disorders, especially if they have a combo Dx like me. I want to know practical, problem solving
approaches/ways they manage their lives.
I'm not too interested in hearing from celebrities,
unless they're really forthcoming and honest.
A well informed doctor can be helpful.
Support
-
Finally, getting support from people who understand is important. Even though all these disorders/combos of
disorders have individual twists and turns to them, everyone seems to have a
basic understanding. Many of us deal
with, or have dealt with, similar issues.
Now it's your turn -
What is your preferred format -
Videos?
Info graphics?
Articles?
Who do you want to hear from - medical profs - and if yes
to this, what kind?
Do you get something out of hearing the story of someone
with an illness, what happened to them, and how they are coping? Do you need
the story to be one you can relate to, or does that not matter?
Do you really mainly want info, and if so, what kind?
If any of you are not comfortable, for any reason,
sharing answers as a comment, please private message Visible Person, Invisible
Problem.
SHARING - Last but definitely NOT least, what are you
most likely to SHARE, to promote?
In addition to helping people who have these invisible
disorders, the purpose of BAW is to raise awareness and get info out to the
public. Have any of you shared anything
and gotten good feedback? Do you feel
people are receptive?
I look forward to getting feedback, as I plan to share it
with the folks at VEDA. You'll be
helping to make BAW a success! Thank
you!!
Hi Tamar! VEDA Ambassador from Texas! I think well done Videos are great. I also like written information for referral purposes. Yes, I have shared with family and previous coworkers (fellow Therapists no less) with lukewarm results...people seem to think they will 'catch' it! I am looking for a Community Health Fair locally. I blog about my life, so I am an open book!
ReplyDeleteMargaret thank you for your feedback - really appreciate it :-) .... what is your blog called? Not sure I've seen it...
ReplyDelete