Story
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I was diagnosed with Multiple System Atrophy in February 2020 after 2 years of feeling dizzy, having balance problems, and other issues with daily activities that I previously did without difficulty: walking, writing, speaking, and elimination. This has really altered the quality of my life. It was a relief to get a diagnosis but it is a condition that no one or their loved ones wants to experience, because it it progressive and fatal. It is not related to MS (multiple sclerosis).
Along with the loving support of my wife, family and friends, Defeat MSA Alliance has been extremely helpful by providing me a way me to connect with other patients, caregivers, doctors specializing in MSA, holding international conferences, discovering clinical trials, advocating for research, and so much more. For the time being I am making the most of my current abilities and taking life one day at a time.
What is Multiple System Atrophy (MSA)? Here's a definition from the NIH:
"Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement. The symptoms reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord."
There is no known cause, no effective treatment and no cure (yet). Due to the fact that MSA is such a rare condition, research funding for treatment and cure is minimal.
For more information about MSA, see Please try the links below:
https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/multiple-system-atrophy#:~:text=Multiple%20system%20atrophy%20(MSA)%20is,pressure%20or%20digestion)%20and%20movement.
https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153
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Defeat MSA Alliance is an inclusive US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research.