Guest Voice: Technological advancements and MG flares
Companies are working on ways to provide predictive data to prevent flares
As the result of his professional background working at companies such as Apple and Dell and a life sciences consulting firm, Thomas Bartlett found himself needing to make a difference in the world of myasthenia gravis (MG). He began by consulting for pharmaceutical companies in the MG space, and now he speaks about applied technologies to improve quality of life through real-time data acquisition and analysis. That includes leveraging wearables and textiles to measure data to better understand and prevent catastrophic outcomes with MG.
I live with generalized myasthenia gravis, and the flares are awful and unpredictable. I was diagnosed almost six years ago and still have not-so-good days, even after having millions of dollars worth of therapies.
I’ve had two intense flares over the past three months. One happened when I flew over 1,700 miles from my home in Groveland, Massachusetts, to Austin, Texas, for the Infusion Access Foundation’s Champions Weekend in December. I had to get up at 3 a.m. to make a 6:15 a.m. flight to be ready to participate in the noon session. I didn’t do a good job thinking that out! I was thinking of the old days, when that kind of travel was normal for me. That’s not so much the case today.
The second one occurred recently and was also a result of my actions. However, I didn’t realize I’d end up in bed for three days based on what I did. Looking back and putting the puzzle pieces together, I can see the clear path toward the outcome.
We had some snow here, resulting in the walkway needing to be shoveled — twice. It was especially cold for a few days, with temperatures in the teens. I had to do some significant driving, which tires me out. Finally, I was addressing some personal financial stress as the result of being unable to work full time. That happened because my MG had hurt my ability to land a job in my former profession. Over the past three years, I’ve been able to generate income in only 20 months.
The combination of all of these factors landed me in bed with some severe symptoms, including diplopia (double vision), droopy eyelids, weak arms and legs, a weak voice, shallow breathing, and an inability to think clearly.
After three days in bed resting, I could feel my body recovering. Today, I’m writing this piece for others who encounter flares in their daily lives. My key is to more fully understand my disease and my body. I use a smartphone, watch, and other technology to track my symptoms in real time. They include my heart rate, sleep, respiration while sleeping, walking steadiness, and a number of other symptoms. These data metrics correlate to what I’m feeling and are critical when I speak with my doctor.
Many people ask me what a flare is. Today, it’s a feeling we have. However, many companies are working on ways to provide predictive data to prevent flares, exacerbations, and crises. Someday in the near future, we won’t need to wait for them to occur, because we’ll have data being analyzed in real time, and we’ll be able to provide patients and healthcare professionals feedback.
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Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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