Dysautonomia International conducted the first ever study of diagnostic delay in POTS patients in December 2013. Our study found that the average POTS patient takes five years and 11 months to obtain a POTS diagnosis. Even after diagnosis, patients often have a hard time finding a doctor with the expertise needed to properly treat their illness. This problem is not limited to POTS patients, as patients with other forms of dysautonomia experience similar difficulties in obtaining an timely and accurate diagnosis.
Dysautonomia International seeks to improve access to high-quality health care for dysautonomia patients, to improve the care current patients receive, and to reduce diagnostic delays for future patients. We also support the development of additional dysautonomia clinics and research centers, so that patients don’t have to travel half-way across the country for autonomic testing.
To accomplish this, we must expand educational programming for medical professionals on autonomic disorders. To date, we’ve organized physician and nurse education programs at medical schools, hospitals and conferences in DC, Virginia, North Carolina, New York, Texas, California, and Washington. We have 2016 programs planned for Massachusetts, Pennsylvania, Indiana, New York, and Illinois. We’re also working on an online physician education course that will be widely distributed to medical professionals throughout the US via email, which will also be available to medical professionals and patients around the world on our website.
We are aiming to raise $31,000 in the 31 days of December to expand our physician education program in 2016. Help us raise 31k to reduce diagnostic delay! www.
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