Fighting for her life

Fighting for her life

LAM is a fatal disease affecting thousands of women by attacking healthy lung tissue. Amy Farber, a former Northeastern student, is fighting back with research, knowledge and a passion for unearthing the mysteries of her condition.

Society instills a life-sequence notion in every person, whether he or she likes it or not: High school, college, marriage, children. But what if a derailment in the course of a lifetime changed all your dreams, and made it impossible to start a family? Would you fight back and search for answers?

Amy Farber is doing just that, researching and fundraising for Lymphangioleiomymoatosis (LAM), a rare and incurable disease.

Farber is a former Northeastern Law student who married her best friend, Michael Nurok, in August 2004. But when they were ready to start a family in April 2005 she was diagnosed with LAM. Very little was known about the disease, and Farber decided to draw from her expertise from studying how researchers work to mobilize people to try to find a treatment sooner.

LAM ravages healthy lung tissue and many women with LAM experience shortness of breath. Women also may have repeated lung collapses.

“It [LAM] still progresses, and having children speeds that up,” said Farber.

According to the LAM Treatment Alliance Web site, the condition is a “rare, fatal lung disease that affects women in their childbearing years. In LAM, abnormal smooth muscle-like cells proliferate in the lungs, pulmonary airway, parenchyma, lymphatics, and blood vessels, ultimately leading to respiratory failure.”

Many women with LAM go undiagnosed for many years because in order to diagnose it definitively, women need a high-resolution Computed Tomography (CT) scan of the chest and often abdomen and/or a lung biopsy, neither of which are routine tests, and which are very expensive.

“Women are commonly told that their lung symptoms stem from something that is likely very common, or they are told that it could be stress,” Farber, a Boston resident, said. “They are often not offered CT scans for different reasons. CT scans are expensive. There are 45 million uninsured Americans. If you don’t have health insurance, you may not get a CT scan for symptoms that can easily be confused with something far more common.” She went on to explain that it is not the doctor’s fault.

“Even the most passionate and well-meaning doctors may not detect it because it is so rare,” Farber said.

After attending UC Berkeley and Harvard University for undergraduate studies, she received her Ph.D. from Harvard and then went to Northeastern. Just six months shy of her law school graduation she left to start the foundation so she could devote her time and energy to find a cure faster for herself and all women with LAM.

“I applied to Northeastern School of Law because of their expertise in training for practice in public interest legal settings,” Farber said. “I was interested in a physician’s understanding of the law and how defensive practices that undermined patient care could fill the gaps when physicians were afraid of the law but didn’t know its limits in great detail.”

She wanted to educate herself on all the details of legal and ethical issues involved with her new passion, helping people with LAM by finding a cure.

“I was interested in the fuzzy line between legal and ethical questions that arise in the context of medical care or in the process of medical research,” Farber said. “I was interested in the ways that law and policy affected the struggles of people around the world for access to treatment for life-threatening illness.”

For Farber, the diagnosis came at a time that forced her to accept that having children could be fatal for her. And she said she was lucky to get a quick diagnosis as it can take years for some women. She works out of her newly donated Cambridge office in Harvard Square.

“There was nothing I could do about it. My diagnosis came quickly, and I’m lucky for that, but I almost wish I didn’t know, it’s so heavy. ‘How do I live like this everyday?’ I cope through action,” Farber said.

Now she is an expert on all things LAM and educates and researches with the help of scientists and other patients and works out of her Cambridge office in Harvard Square. She has also learned about other rare diseases which affect more than 25 million Americans, or approximately one in 10, according to the National Institutes of Health.

“Women are commonly diagnosed in their childbearing years, anytime after they start menstruating. LAM destroys healthy lung tissue and progressively, the lungs fill up with thin-walled cysts that impede normal oxygen exchange,” Farber said. She said women become dependent on supplemental oxygen and can die prematurely.

“Some women progress to respiratory failure within a few years. Others can live for over 10. We don’t know who we are in that mix,” Farber said.

She said she enjoys many things in life and is mostly thankful that she can still swim, one of her favorite activities.

“I cherish that I can still swim. I do this year- round and I love to be outdoors with Michael and my dog, Ray.” She said it is the simplest everyday activities that she enjoys most, including fresh fruit in the summer, all the different seasons, spending time with her husband and friends and having long meals with good conversation. But the work she does with the LAM Treatment Alliance she founded, which has raised over $500,000 for LAM research, is what she finds the most rewarding.

“I find this work very satisfying because of the generosity and intelligence of those who are collaborators in this process, especially scientists.”

The condition takes its toll on Farber in a different way, as she is unable to fly because she is at increased risk for lung collapse.

“I don’t get to see my family and friends in California as much as I would like, and I wish I could. They are very important to me but flying is extremely risky.”

“There’s always something new to learn about someone or something.” Farber said there is much she would like to do, but that the science comes first.

“There is more, but a lot is on hold as I work to guide this mission forward,” she said. “It’s a race against time.”

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