Women battle LAM

Canadian and U.S. women with the incurable lung disorder lymphangioleiomyomatosis, or LAM, have joined forces to raise funds and bring doctors and scientists together to search for a cure.

An incurable disease is not the kind of material that usually gets big laughs, but Catherine Lawrence is trying to find humour where she can.

The motivational speaker and founder of the company Survival of the Funniest has lymphangioleiomyomatosis, or LAM. And she's taking her own advice, using humour as her best medicine. 

The former marathon runner from Toronto was diagnosed two years ago after finding herself short of breath during her runs. She was stunned:  "I'm like Mary Poppins — Supercalifragilistic?…I couldn't even pronounce it."

These days, she can explain the fine details of a disease that is making "Swiss cheese" of her once powerful lungs.  She also has a fundraising agency, Green Eggs and LAM (a takeoff on the Dr. Seuss book Green Eggs and Ham ), to help bring specialists together to find a cure.

Those researchers met in Toronto on April 3, 2009. Lawrence was there, clutching a copy of Green Eggs and Ham and sporting an apron with a drawing of lungs on the front and the caption "Nice Pair."  It was Lawrence who raised the money to bring in scientists from out of the country for the summit.

The married mother of three is one of about 250,000 people who are known to have some form of LAM. But doctors don't know what causes it, there is no cure and it almost always strikes women in their child-bearing years.

It's often confused with asthma and emphysema, so doctors think it's probably under-diagnosed.  The average time it takes to figure it out is about four years.  Symptoms include:

  • Shortness of breath.
  • Chest pain.
  • Collapsed lung.
  • Abdominal discomfort.
  • Frequent coughing.

In the worst case, a woman can die within a couple of years.

Although she now gets too winded to run, Lawrence still works out almost every day and is determined to wisecrack her way through it all, like about her newfound fondness for escalators. 

"I love escalators!" she says with a laugh. "I was one of those people who never took an escalator. I always took the stairs. But [now] stairs are tough."

No specific research on LAM is done in Canada so Lawrence went to the National Institutes of Health in Bethesda, Md., to be part of a research project after she was diagnosed. 

Family planning confounded

It was through that connection that she met Amy Farber, another LAM patient in Cambridge, Mass., and founder of the LAM Treatment Alliance. The two have formed a dynamic duo and pulled the Toronto summit together.

"It’s a race against time," Farber says of her fight to find a cure.  She, too, has holes in her lungs and her case is worsening although she still has fairly normal breathing.

Farber discovered she had LAM in 2005 just after she got married and was planning a family.  Something in her upper abdomen was bothering her so she went for a checkup. When the discomfort didn't stop she went for a CT scan and discovered small cysts at the base of her lung and a lesion next to one of her kidneys. 

Within four months she was diagnosed.

Her plans to have children were thrown into confusion because she was advised not to get pregnant. She was told the sustained levels of estrogen that occur in pregnancy might accelerate the disease so Farber made a surprising move.

"So I went through one cycle of IVF [in vitro fertilization] and my eggs and my husband's sperm were implanted in another woman who carried our daughter for us.  She's two now, Charlotte. She's amazing. One of my convictions is that if science can help us make Charlotte, it can conquer LAM."

Rare, common diseases connected

Because LAM is so rare, Farber was worried that no one would be interested in doing research but she has discovered that investments in LAM can pay off elsewhere.

"The good news is that rare diseases teach us about common diseases," she says. "And common diseases teach us about rare diseases so it's not a zero-sum game."

She thinks the challenge is not just in lab discoveries, but in pulling together the right group of scientists who might have some of the keys to directing the research.  Farber has taken on the role of finding those scientists.

Lawrence, too, has been humbled by LAM and has devoted a significant amount of time to raising awareness and money. But she doesn't want to it take over her life, at least not yet.

"I don't want to be the face of the disease. I'm just somebody who can help knit people together and I can help in my way and a way that suits my philosophy. I make time for laughter."