April 17, 2013
As a life-long athlete, running, swimming, hiking, tennis, and skiing give me mental clarity and great joy. So it was shattering to learn two months ago, at the age of 37, that my lung function and quality of life would slowly begin to deteriorate.
Lymphangioleiomyomatosis (LAM) is a lung disease seen only in women. It affects around 1,500 in the U.S. alone, and is often initially misdiagnosed as asthma. Due to uncontrollable proliferation of smooth muscle cells, cysts develop within the lung, gradually destroying it. As breathing becomes more difficult, women with the disease go on oxygen tanks. There is no cure. Ultimately, many require lung transplants.
Treatment comes in the form of slowing the disease progression. The only tangible hope in that realm comes from National Institutes of Health-funded research using an experimental drug called rapamycin. Other treatment and coping strategies are ad hoc at best, ranging from hormonal therapies to herbs, acupuncture, and dietary changes. Traditionally, rapamycin was used to prevent organ rejection after transplantation, but through the efforts of biomedical researchers across the country and NIH facilitation, the drug was recently approved for the treatment of LAM patients to slow progression.
Now, with research funding at an all time low, the odds of continued development are not in our favor. The sequester is essentially slowly killing me and millions of patients still looking for cures.
Read more at The Atlantic.
(Image via Alex011973/Shutterstock.com)
April 17, 2013