By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this, and I highly recommend it. It has become a lifesaving tool for me. Upon hearing the news of my dermatomyositis diagnosis back in 2020, I…
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By Mike Matthews At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure. Despite the best efforts of…
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By Mike Bradbury Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good advice for anyone, even if you don’t live with a chronic health condition.] 1. Do your chores. As best you can, continue your normal routine,…
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By Iazsmin Bauer Ventura, MD On November 1, 2024, Dr. Ventura offered the following words at The First Annual Meredith C. Thomas Trivia Fundraiser, a benefit for TMA’s Meredith C. Thomas Memorial Fellowship fund. This research fellowship is currently recruiting a physician scientist to study antisynthetase syndrome and myositis interstitial lung disease. I am a…
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The path of discovery is not often a straight line. Most times it winds around from one question to another. Sometimes the trail just stops until someone else with a vision comes along and imagines where that dead end can go. When Dr. Julio Huapaya arrived at the NIH for a fellowship in pulmonary and…
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