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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 RSD in the United Kingdom.
“After the injury, the RSD
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 RSD, and is totally committed
to raising awareness of RSD in the UK.
“There is very little information
on RSD 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 RSD 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 RSD, 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 RSD in the UK. The petition had 1,500 signatures,
asking the Department of Health to set up a program to educate
doctors about RSD 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
RSD. “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 RSD. Tudy Lapinskis’ e-mail address is trudy@fenland.junglelink.co.uk.
Her website is www.rsdhelp.co.uk. |
