Raising Awareness in the UK—Trudy Lapinskis
By Daria Charlesworth

As a teenager and young adult, Trudy Lapinskis of Whittlesey, England, was “the life and soul of the party.” An outgoing person, Trudy was always ready for dancing, going out to clubs, playing squash or “rounders,” running cross country, even trampolining. When she bumped her lower back on a large table at work in November 1994, it was a minor injury. At that time she could not have imagined the course her life would take, including becoming one of the leading patient advocates for CRPS in the United Kingdom.

“After the injury, the CRPS was not identified for a year,” says Trudy. “It was first identified as algodystrophy. I had pain in my back and down my left leg like hot liquid pouring through it. The only treatment I was given was one sympathetic block and one nerve root block. They mostly thought it was in my head, especially as I was pursuing legal action for the accident. This I found was a huge stumbling block. The doctors do not target the pain until it’s too late, which I feel was true in my case”.

Fortunately, after three years Trudy found a well-informed and sympathetic pain specialist who cares for her today. Unfortunately, by the time she found him she had contractures in her left leg and other complications. About a year ago she had an excruciatingly painful electromyelogram for the purpose of her legal case, and subsequently developed massive swelling of her lower legs. Nevertheless, Trudy is a dedicated advocate for people with CRPS, and is totally committed to raising awareness of CRPS in the UK.

“There is very little information on CRPS available here. I have gotten my information from videotapes sent from the US, which I copied for my doctor,” says Trudy. “A local charity got me a computer, and I get information from other countries over the Internet. Without the computer it would be hopeless. I gathered the information together and set up a simple website (www. rsdhelp.co.uk).” Trudy stays in touch via e-mail with CRPS sufferers in the UK, and responds to e-mails that come into the RSDSA site from England. “The US is so far in front about CRPS, and your knowledge can help us lots. Our doctors need educating desperately, and need to know how crucial early treatment is. I think having RSDSA behind me can help get this message across.”

Last year, Trudy made a trip to London, to No. 10 Downing Street, to give a petition to Cherie Blair, wife of the British Prime Minister, to raise awareness of CRPS in the UK. The petition had 1,500 signatures, asking the Department of Health to set up a program to educate doctors about CRPS so they can diagnose and treat it early. “My nieces Stephanie and Rachel came to the door of No. 10 with me, and it was a fantastic moment on the red carpet of the P.M.’s residence, handing in the petition. ” Alfie Burns of RSDSA-California and Judy White of Australia assisted Trudy in arranging the meeting with Mrs. Blair.

Trudy was able to fly to the US for the International Update on RSD/CRPS in Tampa last February, thanks to Virgin Airways.

An accomplished poet and songwriter, Trudy Lapinskis uses all of her gifts to raise awareness of CRPS. “I want to help everyone I can with my own experiences, and hopefully can prevent them from ending up like me.” With hard work, maybe all of us can end up like Trudy—generously giving our talents and energy to raising awareness and seeking a cure for CRPS. Tudy Lapinskis’ e-mail address is trudy@rsdhelp.fsnet.co.uk. Her website is www.rsdhelp.co.uk

RSDSA Review.