LAM Canada will be hosting a meeting of LAM patients and LAM Scientists in Toronto during the afternoon of May 17, 2008. More information as it becomes available. Please plan on joining us.

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Canadian LAM patient Catherine Lawrence was featured in an article in the October edition of MORE magazine (Canada's magazine celebrating women over 40). The article described Lawrence's struggle with her diagnosis of LAM.

This year the LAMposium was again held in Cincinnati, home of the LAM Foundation. LAM patients from around the world along with their families and friends were in attendance.

Presentations from the meeting can be read/heard at the LAM Foundation's website www.thelamfoundation.org

The LAMposium ended with a gala dinner/dance, silent auction where over $82,000 was raised!!!

The LAM Quilt was again very successful. For those who may not know about this project... Each year, a LAM and post-transplant patient sews together "squares", sent in by patients, to make a beautiful LAM Quilt. We, (the patients) then buy it to give to a special person. Past recipients have been Sue Byrnes, Dr. Joel Moss, and Dr. Frank McCormack.

The quilt celebrating the 10 year anniversary of the LAM Foundation

In April 2007, the second annual "Spring Fling for LAM" fundraiser was held in Ontario. It was a fabulous, memorable evening organized by Ontario LAM patient Nathalie, her friend Pamela and family. The setting was the luxurious Brantford Golf & Country Club House with its view over the Grand River.

Raffle tickets were sold - "an arm's length" for $20 - at the event for a number of items to be raffled and included (from LAM patients): a woven baby blanket from Kordula and a needlepoint pillow stitched by Marsha.

After a yummy buffet dinner, Nathalie spoke about LAM and showed the LAM video to the audience of about 80. In addition, Kellie told her story of her journey with LAM and Marsha answered questions from the audience. Dinner was followed by dancing with music by a local DJ.

Several LAM women from Southern Ontario attended in support of Nathalie: Ann, Janice, Beryl, Liz, and Beverly. A good time was had by all!

A very special thank-you to Nathalie and Pamela for all their hard work and for raising over $8000 for LAM!!

This was the second year that LAM Canada was represented at the 2007 Women's Health Expo in Toronto thanks to a grant from the oxygen provider Respro to cover the cost of the registration. This 2-day event, attended by over 20,000 people, is the largest health expo in Canada. Participating in this event significantly raised the awareness of LAM among the general community. LAM patient Beverly and friends staffed the display booth (lent to us from the LAM Foundation), distributed pamphlets, sold bracelets, and answered questions about LAM.

Beverly who organized the display takes a well deserved rest break.

VICTIMS KEEP UP BATTLE AGAINST RARE LUNG DISEASE

By: Pamela Cowan, The Leader-Post Thursday, March 02, 2006

Reginans Joyce Rosenfeld and Michelle Briscoe are unwilling rarities.

Michelle and Joyce.

They have a rare, incurable lung disease and they live in Saskatchewan -- the province with the highest incidence of lymphangioleiomyomatosis (LAM) per capita in North America.

Seven Saskatchewan women out of 53 Canadians diagnosed with LAM doesn't necessarily mean there is something inherently unhealthy about the province, according to research done by Dr. Marsha Cohen, a Toronto doctor who is also a LAM patient.

"She believes that Saskatchewan doctors are more knowledgeable and aware about LAM and they catch it sooner," Briscoe said.

LAM occurs when an unusual type of muscle cell invades lung tissue and grows uncontrollably. Over time, the muscle cells block the flow of air, blood and lymph to and from the lungs.

The cause of LAM is not known, but since the disease occurs almost exclusively in women, it is thought to be hormonally related. Symptoms may include shortness of breath or in the case of Briscoe, chest pains. When she went to hospital, she was diagnosed with a collapsed lung.

"Prior to that, I didn't have any symptoms that made me think I had any kind of breathing problems," said the 34-year-old.

The lung disease has progressed rapidly in Briscoe's case.

"In the 31/2 years since I've been diagnosed, my lung function has declined about 25 per cent. When I was diagnosed, I was in the 65-to 70-per-cent range so I didn't use oxygen," she said.

In December, Briscoe started needing oxygen upon exertion. Now she requires oxygen while sleeping.

Rosenfeld also uses oxygen. Just before she turned 50, she experienced severe pain when muscle cells proliferated her lymph system causing tumours to form that resulted in blockages. After the tumours were surgically removed and biopsied, Rosenfeld was diagnosed with LAM in April 2003.

Although no treatment has been proven effective, experts at the National Institutes of Health in Bethesda, Md., suggested that Rosenfeld begin a pulmonary rehabilitation program.

Now the 53-year-old works out twice a week at the Dr. Paul Schwann Applied Health and Research Centre where Phyllis Bend, the program co-ordinator, has devised an exercise and low-fat diet program for her.

Oxygen tank in tow, Rosenfeld warms up by walking around the track three times and then works out on equipment that includes weights and exercise bikes.

"I have to stop occasionally when my oxygen level drops," she said. "My heart rate and oxygen levels are monitored so they are at an optimal level. My lung quality is never going to get better, but I try and maintain what I have through exercise and diet."

Briscoe wishes Regina had a pulmonary rehab program.

"The Paul Schwann Centre has the next best thing for us," she said.

"Phyllis and the staff have adapted the cardiac program to meet our needs. It's not a program specifically for LAM patients but it would fit for anybody with emphysema or chronic obstructive pulmonary disease."

Knowing that LAM can be fatal, Briscoe plans to go to Edmonton in May to be evaluated for a lung transplant.

"LAM has not come back in the new lungs so that's very positive, but I'll be trading one set of problems for another," she said.

"In any kind of transplant, you're on anti-rejection drugs for life, but I'm not ready to give up the fight."

Copyright 2006 by the Leader-Post, a division of CanWest MediaWorks Inc. Used with permission.