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.