Her lungs are weak . . .
her purpose is strong

By Ruth Rovner
For the Times

Alanna Nelson of Elkins Park never thought of herself as an activist. But that was before she was diagnosed with a rare disease that has given her a sense of mission.
Until then, she’d been a busy career woman, wife and mother. An accountant with an MBA, she climbed the corporate ladder and held a responsible position with a company in New Jersey. She was also devoted to her husband and young daughter.
Then, one day last winter, she had chest pains severe enough to land her in the emergency room of Abington Memorial Hospital. It turned out that one of her lungs had collapsed. This led to varied tests, then to a diagnosis that came as a total shock.
She had a rare disease with an unpronounceable name — lymphangioleiomyomatosis, which is known as LAM. It’s a progressive lung disease that typically strikes women in the prime of life. Nelson was 38 when she was diagnosed.
Because it’s so rare, it often gets misdiagnosed or even ignored. In fact, six years earlier, Nelson had suffered a similar lung collapse but no one diagnosed LAM. Instead, she was told her collapse was a fluke. No wonder the diagnosis took her by surprise.
“I was stunned.” says Nelson, “I had never even heard of LAM. At first, I was in complete denial. I just didn’t relate this disease to myself.”
No wonder she felt this way.
“I was a Type A personality, and this left me feeling very vulnerable. It was one aspect of my life I couldn’t control.”
But she soon realized that she could control what she did about it. Nelson decided to write a letter to friends and family members, explaining her condition.
“It helped me get from denial to acceptance,” she explains.
She also set out to learn all she could about her disease. She started by contacting the LAM Foundation, an organization devoted to information, advocacy and funding for research.
“It’s a great resource for finding out the facts about LAM,” she says.
When she learned last fall that the federal government was actually cutting funds for LAM research, she was spurred to action.
“I realized I had to do something — for myself, my family and for other women with this disease,” she says. “It was a catalyst for me to act.”
In October, she established the Philadelphia Friends of LAM. Before this, there was no local arm of the LAM Foundation.
“Our focus is fund-raising for research and also raising awareness,” she says. “It’s become my mission.”
Lately, she’s been busy planning for a fund-raising event, “Bid & Bake for a Breath,” which will be held Sunday, Feb. 24, at Congregation Knesseth Israel in Elkins Park. The event will include a baking contest for children and adults, followed by a silent auction.
A core group of 20 dedicated volunteers have been helping her, including fellow LAM patient Kelly Matlick of Collegeville, whom she met on a LAM chatboard.
But Nelson has been the chief organizer, planning the details, recruiting volunteers and sending out letters requesting donations for the auction.
And she’s been delighted with the outpouring of support not only from friends but from the business community as well.
“The donations from companies have been truly amazing,” says Nelson.
Airline tickets, autographed sports memorabilia, a year’s worth of dance classes, hotel stays — all these and more will be auctioned.
Although she’s thrown herself into this project with enthusiasm, it’s not the same high energy she once had. Living with LAM is a reality she cannot ignore. It directly affects her weakening lungs and thus her breathing.
She has certainly felt that vulnerability since her initial diagnosis last February. When her left lung collapsed at that time, she needed surgery to help her lung adhere to her chest wall. Despite this, she’s had three other lung collapses since then — in May, October and December. And by now, her right lung is also affected.
These collapses are caused by cysts on the lung, which is one of the defining symptoms of LAM. These cysts create holes in the lung, causing it to collapse. Nelson, now 39, feels the effects of her weakened lungs every day.
“Breathing is more difficult, and by the end of the day, I’m exhausted from the effort of breathing,” she says.
Currently, there’s no medical treatment to slow the progression of the disease, and there’s no cure. But however discouraging this is, Nelson does not feel hopeless.
“I’m not in the advanced stages of the disease, I’m at the beginning,” she says. And the fact that she’s been diagnosed early is a great advantage.
That’s why she’s so grateful that last February, when she was hospitalized for her lung collapse, her doctor at Abington, Bruce Roy, insisted on additional tests when her lung biopsy came back negative. The biopsy showed that she did not have lung cancer, but Dr. Roy was determined to find out why her lung had collapsed.
“He’d never had a LAM patient, but he studied all of the test results and connected all the dots,” she says. “His diligence was so fortunate. Otherwise I could have walked out of there undiagnosed.”
Now she’s being treated by Dr. Robert Kotloff, chief of advanced lung disease at the University of Pennsylvania, who is presumed to be the only area doctor who treats LAM.
“He reassures me that I can lead a reasonably normal life,” she says. “And since I’m in the beginning stages, the disease could progress very slowly.”
For now, she’s much more fortunate than other patients whose lungs are so weak that they are dependent on oxygen to help them breathe. She may someday get to that point, too, or even need a lung transplant.
That’s why she and other LAM patients feel a sense of urgency about the importance of research to find drugs that could slow down the disease or even cure it. One drug trial is now underway, but it’s still in the early stages.
Nelson is doing her share to raise funds and awareness, which is why she’s been so busy planning the upcoming fund-raiser.
But the disease has been a life-changing event in other ways, too.
“I’m not a workaholic anymore,” says Nelson. She still has her high-level position as accountant with Art Guild, but she now has a much more flexible work schedule.
Then, too, her perspective has changed. “I now try to smell the roses,” she says. “I always looked towards tomorrow and never appreciated today. Now I really enjoy each moment I have with my family.”
Meanwhile, she remains committed to a cause that’s deeply important to her: helping to raise awareness and funds for a disease that may shorten her life and that of other women who have LAM.
Her energy may be limited, but her sense of purpose is intensely strong.
“I remind myself often that I won’t let this disease beat me,” she says. “Instead, I’ll be part of the solution.” ••

Help clear the air . . .

Bid & Bake for a Breath, a fund-raiser for LAM, will be held 1 p.m. Sunday, Feb. 24, at Congregation Knesseth Israel, 8339 Old York Road, in Elkins Park. For information about the event, e-mail LAM.cure@yahoo.com
Events include tricky tray and silent auction, cash raffle, baking contest, activities for kids, and a short presentation about LAM by Dr. Elizabeth Henske.
Admission is $5 per person or $10 per family. All funds raised benefit the LAM Foundation.
For more information, e-mail Alanna Nelson at LAM.cure@yahoo.com
For general information about LAM, visit www.thelamfoundation.org