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Our Stories: 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
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