Family copes with rare nervous system disorder


Family copes with rare nervous system disorder
Son organizes benefit to educate, raise funds for syndrome
By Christine Varno
Staff Writer

OCEAN TOWNSHIP – – When township resident Bruce Shapiro learned that his father had been diagnosed with a rare nervous system disease, he wasn’t sure what to expect.

In 2002, after being in a car accident, Shapiro’s father developed reflex sympathetic dystrophy syndrome (RSDS), a condition that he, his father and his family knew nothing about previously.

“I had never heard of it before,” said Shapiro, 25, in an interview last week. “I did not know what caused it. I did not know the symptoms. It was scary.”

After witnessing the devastating effects of the disorder firsthand, Shapiro has decided to host a fundraiser in honor of his father, Leslie E. Shapiro, 53, of Freehold, on June 23 from 7 to 9 p.m. at Racioppi’s on Oakland Street in Red Bank.

The event is also being co-hosted by Samantha Giraldo, of Elizabeth, whose sister, Ashley Ray, also suffers from the disease.

A donation of $20 is requested at the event, and all proceeds will benefit the RSDS Association.

In addition to raising money to research RSDS, more important, Shapiro said his hope is to raise awareness and to educate people on the disease.

“While this is a rare disease, I have seen firsthand just how devastating its effects can be,” he said.

“For instance,” he said, “for someone like my father, a slight tap on the back can send him into a seizure.

“The only way I can explain this in layman’s terms is that his nervous system is misfiring,” he said.

RSDS is a neurological disorder with symptoms that include sensitivity to touch and burning pain, according to Shapiro.

Additional symptoms include pathological changes in bone and skin, excessive sweating, tissue swelling and sleeplessness.

The disorder, also known as complex regional pain syndrome, is generally developed after a traumatic accident, such as a car or sports accident, Shapiro explained.

Although Shapiro’s father is completely functional, the disease has radically impacted the way he lives his life.

“He can only drive for 20 minutes at a time, is now on full-time disability from his job at AT&T, where he worked prior to the accident and requires rest between activities,” Shapiro said.

“He thinks, he walks, he drives and he talks,” Shapiro said, adding, “But something as simple as driving can trigger a flare-up [of the disease].”

Such flare-ups include losing the ability to speak, shooting pain and seizures.

“At the beginning, he couldn’t drive for about a year-and-a half and was having a few [flare-ups] a day,” Shapiro said.

But Shapiro said with the help of a neurological physical therapist, his father has learned to manage the disease.

He explained that although the flare-ups occur less frequently, his father’s RSDS symptoms are still triggered through the simplest of things, such as contact with other people.

“Even the little things, like shaking someone’s hand,” he said. “So he always has to explain why he is not shaking someone’s hands so it doesn’t look rude.

“Or the impact of a car ride, if he hits a bump or the wind blows too hard, it can cause a nervous system backfire,” he said.

“He can drive my mom to the grocery store,” he continued, “but he can’t help put the packages in the car. Anything can trigger an attack.”

Shapiro said that many people like himself have never heard of RSDS and do not know of its symptoms until it affects their lives in some way.

“This is evident by the fact that my father had to go to several doctors before being diagnosed,” he said.

When Shapiro attended a fundraiser with a friend earlier this year for leukemia research, he said that he knew he wanted to celebrate his birthday this month by hosting a similar event in honor of his father.

The fundraiser will include speakers, educational materials on RSDS and refreshments.

Although treatable, Shapiro said that RSDS is not curable.

Currently, the RSDS Association is conducting research to find new treatments and hopefully one day, a cure for the disease that affects between 200,000 and 1.2 million Americans, according to Shapiro.

The RSDS Association also produces educational materials to inform people about the rare disease, Shapiro said.

“This is the first year we are having this fundraiser,” he said. “I would like to make it an annual event. The more people who hear, the more people who will know about it.”

Over 90 people have already committed to attending the fundraiser, including Assemblyman Michael Panter, Sen. Joe Vitale, the RSDS Association and people living with RSDS.

“With a disease that is so rare, every person and every dollar counts,” Shapiro said. “Hopefully people will be able to meet people living with RSDS and walk away with a greater understanding of this disease.

Shapiro added that Panter introduced legislation, A-4208/5-249, to help raise awareness of RSDS in New Jersey.

For more information on RSDS, visit http://www.rsds.org, contact Shapiro at (732) 239-4645, or e-mail to bruceshapiro621@hotmail.com.



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One response to “Family copes with rare nervous system disorder

  1. If I told you there might just be something that will take away all your pain, cost much less than pain medicine, not be addictive, improve your overall health and possibly put your RSDS into remission or cure it, would you believe me? I’m using nutrition and it’s taking away all my symptoms. I’m not using ONE single pain medicine and I am getting rid of between 95% and 100% of my symptoms every day. I have been for a year and a half. Come read my blog and try to keep an open mind. After all, we can become addicted to a certain way of thinking about ourselves, our world and what is and isn’t possible. Suspend judgment and please read what I am blogging. If you try it you have nothing to lose and it could change your life for the better, significantly, as it’s changed mine. I’m not promising anything, but I am spreading the word because what I’m doing has transformed my life. I’m not making ONE single penny off of this. I want to help others. That’s it. Seriously, please read my blog: http://isthisthecure4rsds.wordpress.com/.

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