Persons with syndrome suffer for weeks due to poor recognition
Postural Orthostatic cardiac Syndrome more commonly known as POTS is a disorder which affects thousands of Australians. Researchers say it's poorly recognised and has been linked to viruses like COVID-19 with some sufferers struggling with symptoms for months before being successfully diagnosed.
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00:00Tess Hanson looks like a healthy teenager, but spends most days battling dizziness, fatigue
00:09and muscle pain, the result of postural orthostatic tachycardia syndrome, POTS.
00:16Her POTS diagnosis took more than 18 months.
00:19A very dark time, it was a desperate time.
00:23POTS researcher Dr Dennis Lau says Miss Hanson's not alone.
00:28This is still a condition that is poorly recognised in the medical field and lots of
00:34patients continue to present to our emergency departments and being told that there's nothing
00:39wrong with them.
00:40Tess has missed more than 200 days of school.
00:43My social life has very much gone downhill, I don't really see many people anymore other
00:48than school.
00:49While almost 80% of long COVID patients meet the criteria for POTS, there is only one patient
00:56registry in the whole southern hemisphere and that's located here in South Australia.
01:02The first public POTS clinic opened just five months ago and it already has a 15 month waiting
01:09list.
01:10The poorly recognised condition has been linked to viral infections like COVID-19.
01:16That has epidemiologists worried.
01:18If there's been a million people infected, that means we have about 35,000 people with
01:24long COVID in South Australia, at least that many.
01:28And if you're getting 80% of those having some conditions which impact on their autonomous
01:32nervous system like POTS, that's an awful lot of cases.
01:36Tess hopes more people can be made aware of POTS.
01:41This past year we've progressed a lot with like what we've discovered and stuff like
01:45that so that's been very helpful.
01:48Progress on a long road to recovery.
01:54For more information visit www.southaustralia.gov.au