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RSDSA's Response to Paula Abdul's Stories
in the Media
We have received hundreds of emails and phone calls following
Paula Abdul's announcement in that she had CRPS as reported
in People, USA Today, Inside Edition,
Entertainment Weekly, and in an Associated Press news
story that appeared in several newspapers.
We are thrilled that the syndrome was mentioned in media
that reached millions of people. It is a huge step forward
in getting some recognition for a condition that affects so
many of you. However, Paula minimized her experience with
CRPS and offered the media an example of a miracle cure,
which was reported to be Enbrel®. We would like to clarify
some things for you.
The story was about Paula Abdul, not CRPS. In
some headlines, such as that in USA Today, Abdul says
odd behavior not drug-related, gives a clear indication of
the story's intent—to explain her behavior but not necessarily
to educate people about CRPS.
The story did a poor job of educating the public on CRPS.
All of us would have liked to see a better representation
of the devastation that the pain brings. Paula's statement
that she was even dancing again was devastating for many of
you who have CRPS.
In addition, we have had several comments about Dr. Norm
Harden's quotes in the story. First, he estimates 500,000
to 700,000 people in the United States have CRPS. Although
we suspect that CRPS may affect more than a million
individuals in the United States, there is no verifiable epidemiological
data of CRPS's incidence and prevalence; the federal government
actually classifies CRPS as a rare disorder with an incidence
of less than 200,000.
Second, he said that people do get on in their lives, and
that patients often undergo physical and psychological therapy.
Dr. Harden spoke with the writer at length about the diagnosis
and treatment of people with CRPS. We believe the statement
about psychological therapy is in relation to the multi-disciplinary
treatment approach that Dr. Harden champions, not an "off
the cuff" remark to minimize what people with CRPS
experience. Remember, the quotes were selected by the writer
to emphasize her story line.
Paula incorrectly described her treatment and this is
being corrected in the media. Paula's statement that she
was taking Enbrel, which miraculously cured her, had everyone
scratching their head. Was this indeed a new miracle treatment?
Jim Broatch, RSDSA executive director, contacted medical directors
at both Wyeth and Amgen (who manufacture Enbrel) to see if
there were any clinical trials on using the drug for CRPS.
They were equally surprised by the announcement. Jim then
contacted Dr. Daniel Wallace, Ms. Abdul's physician, who sent
us a memo stating she was taking Enbrel for an arthritis inflammation
and pamidronate (Aredia®) for her CRPS.
We have sent letters to the editors of People and
USA Today, asking that they print a clarification.
In addition, we are getting
information on pamidronate (Aredia®) used to treat
CRPS. We are also in contact with the manufacturer of
Aredia to see if there are any new studies pending.
This is not our story but you can benefit from it.
Anyone who has CRPS/ or works with people who do would
have written a different story. However, the media exposure
has been excellent—visits to our website have increased
by more than 700% and people are calling and emailing our
office for information. We sent a press release with the tell
tale signs of CRPS to more than 2,000 media outlests nationally.
The fact is that people are talking about CRPS and
that is great news!
We have asked Paula Abdul to work as our spokesperson
to help raise awareness and funds for research.
What can you do?
Write or send an email to the editors
of People and USA Today to thank them for their coverage and
offer to tell your story. Let's keep the ball rolling.
You can also join RSDSA
and help raise awareness in the general public and the medical
community! Or donate to
support our research and awareness efforts.
Contacts:
Editor
People Magazine
Time and Life Building
Rockefeller Center New York, NY 10020
Fax 212 522 0794
Email: editor@people.com
USA Today
Send an email with your comments to:
http://asp.usatoday.com/marketing/feedback/feedback-online.aspx?type=18
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