“Lymphangioleiomyomatosis.
When I first heard I thought supercalifragilisticexbealidocious I tried
on spell check, I did, and it said no spelling suggestions and I
thought no kidding. “
Lymphangioleiomyomatosis,
is known as LAM for short. It often goes undiagnosed or is
misdiagnosed. It’s caused when a type of muscle cell spreads
throughout the body and collects in the lungs and kidneys. The abnormal cells
clump together into cysts that block air passages and interrupt blood flows to
the lungs. Lawrence was fortunate to find physicians who even knew
about the disease.
“Well
the Doctors told me after an extended version of tests that they were ruling out
asthma and other things. They told me I had this rare lung disease.
The CT scan was really the thing that confirmed it because the xrays
aren’t so useful because they are cysts in the lungs.”
There
are fewer than 100 LAM patients in Canada and almost no medical research here on
the disease. Lawrence found an American research program at the
National Institutes of Health in Bethesda, Maryland - that pays for Canadians to
participate in this study.
“I
was told and it’s true that they have collected a huge database on woman with
LAM. And so they are very knowledgeable about LAM and it was an
opportunity to go and establish a baseline for me where my various test results
were. The people there were fantastic so I have an opportunity to go back in
February to see how I’m doing compared to last year.”
To
stay in peak condition Lawrence uses acupuncture and works out several times a
week. She rests when her chest hurts and she can’t run or swim very
far any more. But she does save some breath for her comedy
monologues. Just off the treadmill she slips into her schtick and
regales me and her personal trainer, Brett Kelleher, about the night before at a
book club event when her mishap with candles starts a fire in a powder
room. The hostess extinguished the flaming towels in the
toilet.
For
Lawrence laughter is a potent weapon against disease. A decade ago
she started her business Survival of the Funniest to teach and promote the
restorative power of laughter in the workplace and beyond.
“I’m
trying to laugh as much or more than ever. Intellectually we all
know how important it is to laugh and how our body feels after we have that deep
gut belly laugh. Every day I start my day with a forced laugh on my
voicemail and that kicks in to real laughter and just a wonderful
chemical reaction in my body says OK, I’m here, (laughs) another day (laughs) -
the department of vitality is open for business. laughs”
An
oxygen machine has a regular beat that sounds like a brush tap on a
cymbal. Marsha Cohen is a doctor and president of the LAM Canada. She is on oxygen 24 hours a day. Dr. Cohen
was diagnosed with LAM in 1995 and at sixty is one of the oldest LAM patients in
Canada. She says while she doesn’t think a cure will be found in her lifetime,
she hopes that Catherine Lawrence may still benefit.
“From 1995 where people essentially knew nothing about LAM
barely heard of it - to 2007 - we now know the cause of LAM scientists
have found the gene. And based on basic science research now we
have founded the first drug trial of a new therapy for LAM. This is
unheard of for any of these other orphan diseases. It’s really
quite miraculous.”
This
year the first clinical trial of Rapamycin - a drug used in transplants to
prevent organ rejection but a new drug for LAM, will get under way in Toronto,
Osaka Japan and at five centers across the U.S.
Catherine Lawrence is actually considered “too healthy” to
be part of the trial. But that has not stopped her from putting her
energy into helping to find a cure. Family and friends touched Lawrence deeply
at her surprise birthday party - turned fundraiser that netted more than
$100,000 for the LAM Canada Foundation.
“I’ve
asked that the Fund be called green eggs and LAM in keeping with an approach
that involves thinking outside the box a little bit and not losing our sense of
humour around this very difficult disease.”
She
wants the Green Eggs and LAM fund to go towards cutting edge research at the
cellular level of the disease. And Lawrence plans to use her comic
abilities to create a vigorous cardiovascular workout that will be good for
anyone’s lungs
“William
Fry who is a pioneer in laughter research from Stanford University says that
100 deep belly laughs are the aerobic equivalent of ten minutes on
the rowing machine - so there you go exercise and laughter, it all works.
’’
For
CBC Radio, I’m Mary Ann Colihan in Toronto.