Reaction to misinformation by Paula Abdul

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 RSD 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/RSD 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/RSD. 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 RSD/CRPS.

The story did a poor job of educating the public on CRPS/RSD. 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 RSD. 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/RSD. Although we suspect that CRPS may affect more than a million individuals in the United States, there is no verifiable epidemiological data of CRPS/RSD's incidence and prevalence; the federal government actually classifies CRPS/RSD 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/RSD. 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/RSD 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 RSD. 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/RSD.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/RSD. 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/RSD 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/RSD to more than 2,000 media outlests nationally. The fact is that people are talking about CRPS/RSD 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:EditorPeople Magazine
Time and Life BuildingRockefeller Center
New York, NY
10020
Fax 212 522 0794
Email: editor@people.com
USA Today
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