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Deana Kiser On Advocacy and Awareness
By Debra Nelson-Hogan
One minute 29-year-old Deana Kiser, was doing a routine workout
at the gym when a fluke accident caused an injury that would
lead to CRPS. Her experience— suffering three long and
frustrating years to get a proper diagnosis of CRPS— galvanized
her mission to create awareness of this syndrome. This very
capable and committed professional — she had public relations
experience before becoming the Human Relations Director of
Edison Mission Marketing and Trading in Boston — has
channeled her talents and energy into making CRPS a household
word.
Deana has been pivotal in having stories run in papers such
as the Philadelphia Inquirer, the Newark Star Ledger, the
Pittsburg Post Gazette and the Allentown Times.
"To date, I believe my most effective awareness achievement
was the story in the February 26 Philadelphia Inquirer, 'A
little-Known Affliction Attracts New Awareness.' It was a
broad, detailed piece which captured the essence of the matter,
but also it hit a very important demographic-Philadelphia
is a nationally recognized medical mecca, and as a result,
their paper has a large number of residents (readers) who
work in the medical field. Also, overall the paper is a highly
circulated publication and this piece was placed on the front
page."
When Deana was diagnosed, she had three burning questions
which influence much of her media decisions: Why did it take
so long to get a diagnosis? Why hadn't I or anyone I know
ever heard of CRPS before? What is a realistic prognosis, and
will there ever be a "cure."
"Each media piece detailing CRPS brings awareness to
individuals who are directly impacted by it, but may not know
about it. They may have the symptoms but not have a correct
diagnosis/treatment. They may be receiving treatment for non-specific
chronic pain or for only the injury that caused the CRPS or,
worse yet, may be told their complaints are all in their head.
These general public media pieces bring awareness and the
possibility of an accurate diagnosis to these individuals.
Deana has also worked to promote an awareness bill in her
home state of New Jersey. "While the bill is still in
process, it is anticipated that it will be passed and enacted
before the Senate session closes in July. The individual committees
and Senate as a whole have been very receptive to this legislation,
and thus far we have full and complete backing by our state
lawmakers. I attribute this to the state media helping to
bring further exposure to this legislation and the impetus
of it, CRPS," she adds.
Although Deana is involved with several projects, she is
particularly enthusiastic about a campaign proposed by Sharon
Weiner, one of the leaders of the Living With RSDS support
group, to conduct an annual flower bulb fundraising and awareness
campaign. Around the country, CRPS Support Groups or individuals,
would sell a bulb accompanied by a card listing the telltale
signs of CRPS and a contact for further information. Deana
believes this is "a brilliant concept with tremendous
promise to further propel CRPS awareness. I believe within
a few years this program can have as much as public recognition
as other annual programs facilitated by various health advocacy
groups." She has volunteered to help Sharon secure media
exposure around this campaign.
In addition, she is working with Joanne Patchinger, a fellow
New Jersey advocate, to produce a documentary on CRPS and pitch
it to various television stations, with applicable formats,
for distribution, such as PBS, Discovery Health, CNN health,
etc. Also in the works: legislation directed solely to physician
education. |
