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We conducted a poll on the Patients Journey Facebook Group page, and over 250 MSA patients participated. The question posed was:

“MSA ravages our bodies but it also takes a huge toll on our mental health. What loss from MSA do you or have you feared most?”

While this was not a scientific study, it does help convey challenges, concerns, and fears shared by many MSA patients. The chart above summarizes the most agreed-upon losses (number of “votes” noted)

Additional answers and comments included:

  • Loss of relationships such as family or friends
  • Loss of hobbies such reading, gardening, knitting, etc.
  • Loss of being able to help around the house – leaving all the tasks you used to do to your caretaker
  • Loss of communication
  • Loss of freedom from pain
  • Having friends with MSA pass away