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Postural Orthostatic Tachycardia Syndrome (POTS)

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Awareness is important to me because even when a patient has the most common form of dysautonomia, postural orthostatic tachycardia syndrome (POTS), it takes an average of 4 years before the correct diagnosis is identified.

Unfortunately, being diagnosed properly does not always mean a patient will get better. Due to a lack of awareness of how prevalent this condition is, very little research is funded by our government, so we still have no cure. Treatments currently available can give back some quality of life, but are not a cure and do not work for all patients. If a root cause can be identified, sometimes treating that helps resolve dysautonomia symptoms.

I became ill in 2008 at the age of 18 and slowly became more and more sick. Due to the lack of awareness about dysautonomia, it took 4 years (and 20+ doctors) from first becoming ill before I was diagnosed with POTS. In the years after diagnosis I saw many doctors and even went to Mayo Clinic. Over 30 different treatments were tried, but my condition got worse and worse until I couldn't do basic things like grocery shop for myself. …show more content…
If I had been diagnosed sooner, the autoimmune disease would not have gone 9 years without treatment, and I may not have become so

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