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I have a vestibular and vision disorder (Migraine Associated Vertigo and Convergence Insufficiency with impaired VOR respectively), neither of which
are obvious when you look at me. The
VEDA Ambassador Board - which is comprised of non-medical people, and of which
I am a member - needs to bring awareness to the public - and the medical
community - that many people have balance problems. A healthy sense of balance is something that
a lot of people take for granted. There
are many people who have invisible disorders that affect that sense of balance,
due to various symptoms; vertigo, dizziness, disequilibrium, or some
combination of these. Migraine
Associated Vertigo (MAV) - which I have - and Meniere's Disease are just two
that come to mind. What causes vertigo,
or dizziness, can be hard to diagnose because there are so many possible
causes.
Balance, as basic as it is, is a very complex task that
involves a lot of pieces. Many people
don't know this, and don't think about it - they just do it. People don't think about their vision, their
brain, their sensory system, their vestibular system all working together. People don't think about Traumatic Brain
Injury (TBI) or strokes (in the young as well as older people) causing vertigo
and disequilibrium. A lot of people
probably don't know what their vestibular system is - a part of the inner ear,
or that vision is much more than literally seeing. Or that the nerves in the bottoms of their
feet provide information to their brains that is crucial for that sense of
equilibrium.
Benign Paroxysmal Positional Vertigo - BPPV - is considered
the most common balance disorder, but I suspect that's simply because it's the
easiest to diagnose, and often (unless it's recurring) relatively easy to
treat. Compare that to MAV, which is a
fairly new official diagnosis, and therefore under-diagnosed, and can be much
harder to treat.
So people like me want to speak up and draw attention to
a whole host of invisible disorders.
Many people look fine, some don't - some look as if they're drunk or are
using a cane. There's a wide range of
experiences among people who have disorders that affect their balance. I want people who are suffering to know about,
and to gain information about these disorders, so they can ask questions and
hopefully get answers. With diagnoses
hopefully treatments are figured out - whether dietary changes, therapies,
medication, and in some cases surgery - so people can find relief. These invisible disorders can at the very
least become more manageable, or greatly reduced, and in some cases, overcome.
But none of this happens without awareness,
so Balance Awareness Week informs everyone. It's been
wonderful to be connected to the VEDA Ambassadors to help spread the word about
my invisible disorders, and I was honored when Cynthia Ryan, of VEDA, submitted
my story to NORD for Mother's Day. I'm constantly reminded of how difficult it
is for people to understand my situation, and how appreciative I am to be able
to help raise awareness so more people, hopefully, can get answers. Not knowing what's going on is SO much worse
than getting a diagnosis. Finding out
you have any one of a number of invisible vestibular or vision disorders is
hard, but it's the only way to have any idea of what to do, and feel some
degree of control!
Last but not least, since I'm posting this on 9/11 - RIP
to all those who died on this day 14 years ago - whether at the hands of the
terrorists, or trying to save a life..... you are not forgotten....
