The Big POTS Study

I recently ran across the Big POTS Study questionnaire on the Dysautonomia International Facebook site. They also have a link to the survey on their Web site. Dysautonomia International can also be found on Twitter at @Dysautonomia. The Big POTS Study is sponsored by Vanderbilt University and Dysautonomia International and means to study the impact of Postural Orthostatic Tachycardia Syndrome (POTS).

The survey took an hour or two to complete. The questions brought up a lot of emotion; it was a bit like picking at the scab of a wound I thought had healed. I don’t think it’s giving too much away to say that there is a question that asks what you think caused your POTS. According to the doctor who finally diagnosed my pernicious anemia, the autoimmune disease pernicious anemia was the cause of all of my POTS symptoms. Pernicious anemia blocks the uptake of vitamin B12, which is critical for myelin sheath formation, so it makes sense that, if someone is not getting enough vitamin B12, their autonomic nervous system is not going to be happy. My blog post POTS vs. Vitamin B12: a Venn Diagram, explains this further.

To complete the survey was a time and emotional commitment, but my hope is that my input will help others. If you have received a diagnosis of POTS, I encourage you to complete the 29-page survey.

October is Dysautonomia Awareness Month.

Be Well & B12!

 

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