Sets up Facebook account;
wants emails sent to ‘The Oprah Winfrey Show’ on July 8
NORTH BRUNSWICK — In 1996, Christine Ortega had hundreds of her family and friends nominate her uncle, who had been diagnosed with reflex sympathetic dystrophy (RSD), to carry the torch in the Olympics, via a contest on a local radio station.
Hoping she could get him enough press coverage so that he could share his story about this not-very-well-known chronic regional pain syndrome, which is a disease of the nervous system, she succeeded in having him tell his story on NBC News.
Although he could not carry the torch, Ortega went in his place, carrying the Olympic symbol for eight-tenths of a mile through Philadelphia.
Ironically, Ortega now is trying to promote her own story about RSD after being diagnosed this year with the disease. In order to do so, she has set up a Facebook page — “A Plea to Oprah for RSD … We Need Your Help!!!!” — to try to acquire enough support so that talk show host Oprah Winfrey will discuss the topic on her show.
“Who better than Oprah to get the word out on something, because she reaches people worldwide,” Ortega said.
The former North Brunswick resident began recognizing her own symptoms in January. On Jan. 20, the 37-year-old slipped and fell on ice and fell flat on her back, but thought she was experiencing normal muscle aches. Two days later, she slipped on a movie ticket left on the staircase, and again fell flat.
But she didn’t have much cause for concern until about a week later, when she banged the same leg she had injured earlier into a bed frame and “it felt like a hot iron was searing my skin” — a similar description given by her uncle, who said he feels like he is in a vat of hot burning oil and can’t get out.
She went to her doctor, who sent her to an orthopedist, who diagnosed her with RSD. She was prescribed oral steroids and physical therapy.
In April she went to an RSD specialist, but she said the disease has very few specialists, and those who do treat patients affected by the chronic pain that is caused by overstimulation of sensory nerve fibers may not have appointments available for years.
Although Ortega was able to secure an appointment due to a cancellation, her doctor moved to Ohio, and a Philadelphia doctor said he could not see her until 2011.
“So many people feel helpless because they can’t get a doctor for a long time or they can’t find a specialist,” she said.
In the meantime, the North Brunswick Township High School graduate is continuing with anti-seizure medication to help improve her circulation and can use muscle relaxers as needed.
She said it hurts to do the dishes, play with her 5-year-old twins and step on the gas pedal while driving. By the end of the day, it can hurt to turn her head, and if she overexerts herself, it can be difficult getting out of bed the next morning.
“It has completely changed my life,” the Cherry Hill resident said. “With this disease, moving is imperative. Not moving around at all can cause limbs to stiffen up and can cause dystrophy.
Moving too much can be painful.”
Now, Ortega is hoping that on July 8, hundreds of people will send emails to Oprah so that so many emails on one given day will make an impact.
She said that even though millions of Americans are affected by RSD, misdiagnoses are common, and late diagnosis leads to the disease spreading quickly to other parts of the body.
“The theory [is] if enough people email Oprah on one day, her producers can’t ignore this outcry for awareness,” Ortega said. “I want as many people in the world to know about it.”
The link to Ortega’s Facebook page is http://www.facebook.com/home.php?#/gr oup.php?gid=113710996342&ref=ts.
Anyone who wishes to help is asked to log on to Oprah’s website, http://www.Oprah.com, on July 8 and at the bottom of the page click on “Contact Us,” join the website, and then click on “Send us your show suggestions” to send a general email using the title “A Plea for RSD Awareness.”
Contact Jennifer Amato at firstname.lastname@example.org.