MSA Awareness Month
March is Multiple System Atrophy Awareness Month. Never heard of it? It’s not surprising, since MSA is a rare neurological condition. It’s caused by the shrinking of nerve cells in several areas of the brain. According to the MSA Trust, it affects about 5 people per 100,000; approximately 16,275 people in the United States. Unfortunately, this disease has no cure or treatment and a life expectancy of 7-10 years from onset. There are a range of symptoms including autonomic dysfunction, cognitive deficits, and changes in personality and attention.
Mike Standefer, 45, was diagnosed with this disease two days before Christmas in 2016. In 2014, after serving in the United States Air Force for over 22 years, the retired Master Sargent found a job at Utah’s Test and Training Range as a security officer. In June of 2016, he transferred to Hill AFB. He and his family have lived in Syracuse for nearly three years. He has been married to his wife, Becki, for 21 years. They have two sons, Elijah (14) and Abram (12).
Mike and Becki can trace the onset back at least six years. Mike was an avid runner. He started feeling “off balance” while running. At the time, he just chalked it up to having flat feet. The next big change was his speech. When he consulted a doctor about his difficulty speaking, the doctors found two polyps on his vocal chords. He had surgery to remove them, but his symptoms did not change, in fact, they only worsened.
In the fall of 2016, Becki was starting to worry that something more than “just getting old” was happening to her husband and encouraged him to seek medical care. It has been a hard path of discovery, but they are both so grateful to Mike’s medical team at the VA, University of Utah and Tanner Clinic. For most patients diagnosed with this disease, it takes years to find the correct diagnosis; for Mike, it only took a few months. Both Mike and his wife truly believe that they were brought to Utah to be able to be diagnosed quicker and for the amazing team of doctors.
Anyone that knows Mike knows that he is a pillar of strength. He is always one to have a good time and not get down on his luck, even with the rapid changes that are happening to his body. Although he is not happy that he or his family has to go through this, his faith is strong enough to know that it is for a reason. That reason may be as simple as being able to educate others about Multiple System Atrophy.
For more information on this complex disease, please check out the MSA Coalition’s website at www.multiplesystematrophy.org