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I am an MIT alum, and I suffer from POTS (postural orthostatic tachycardia syndrome). Before reading about the tragic news of MIT student Christina E. Tournant’s death, most of you had probably never heard of POTS. Most of the doctors that I have seen have also never heard of POTS. However, more people have POTS than multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS). Experts estimate that POTS impacts one to three million Americans, 85 percent of whom are female.

POTS is an autonomic nervous system disorder. Doctors do not fully understand its causes, and there is currently no cure. When you have POTS the bodily systems that involuntary manage heart rate, blood pressure, sweating, digestion and urination don’t work properly. The hallmark symptom of POTS is a rapid heart rate upon standing that resolves when you lay down. When I first developed POTS, I couldn’t get out of bed without having my heart rate skyrocket to over 140 beats per minute (bpm). Now, with my symptoms under control, my typical standing heart rate is around 100 bpm. Imagine feeling like you are running a marathon, all the time, every day of your life. It’s exhausting. Not to mention the nausea, dizziness, heat intolerance, sweating, insomnia and difficulty concentrating that I also endure.

Today people with POTS suffer in frustration. Most doctors don’t know how to diagnose us; the average diagnostic delay is six years. Uninformed doctors tell us we must be crazy or stressed. When we do finally get diagnosed, there are limited treatment options. The most broadly agreed upon treatment is exercise, plenty of water and a very high-salt diet. We experiment on ourselves by altering our diet, trying new exercises, bouncing from medication to medication, sometimes even grasping at straws that worked for some POTS patients we met on Facebook. Externally, we do not look sick; dealing with the stigma of using a wheelchair or handicapped sticker can thus be awkward.

When my POTS symptoms first appeared, I went from working a full-time job, playing soccer after work and hiking on the weekends, to bedridden in a matter of days. I spent two weeks at two different Boston hospitals where I underwent every test imaginable. I was released from the hospital far too sick to care for myself and forced to live with my parents for almost a year. When I finally returned to living on my own, my days revolved around showering, preparing meals and physical therapy. It was simply too exhausting to handle anything else.

Progress is painfully slow. Even now, four years later, I am tested everyday physically, emotionally and mentally. My energy has to be managed carefully, which means if I need to run errands today I probably won’t be able to cook dinner tonight. I was once a typical MIT student. I did everything, and I did it passionately. I played on the soccer and basketball teams. I was a UA for 2.007. I stayed up late studying. And I went to Pour House, a burger joint on Boston, on the weekends. I can’t imagine dealing with the rigors of MIT while managing my health. MIT was incredibly hard, but having POTS has been the biggest challenge of my life.

Part of my fight against POTS has been to raise awareness and research funds. I started doing a walk every year with my family and friends to raise money for POTS research and to keep myself motivated during physical therapy. This year I am very excited to be planning a POTS Walk and 5K race that is open to the public. In this small way I feel control over my illness, because I can contribute to fixing the bigger problem. I will be dedicating this year’s POTS Walk and 5K race to Christina Tournant.

As an engineer, MIT taught me how to fix things that are broken. It is infuriating to know that there is no way to completely fix my broken body. I am the model patient; I follow every doctor recommendation, participate in POTS research studies, experiment with new medications and work religiously at physical therapy. But the reality is, my life will never be the same. I will probably never play soccer again. I might never work a full-time job again, and I will be on some form of medication for the rest of my life. That reality makes me sad. But MIT also taught me how to persevere. I might not be the exact same person anymore, but my tenacity still remains.

Sarah Mendelowitz is a member of the Class of 2003, graduating with an SB in mechanical engineering in 2003 and an SM in mechanical engineering in 2005.