STARS Patient Information
Jane's story - Raising awareness of PoTS and dysautonomia
Long-term supporter and ambassador for STARS, Jane Bateson, has made it her mission to raise awareness of PoTS and dysautonomia.
Despite suffering from frequent faints and dizzy spells, Jane, 68, has driven her energy into helping raise awareness of her condition.
Dysautonomia and PoTS are often underappreciated by doctors which can have an impact on a patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head.” Many are uninformed about the disabling symptoms caused by dysautonomia, which can include faints, fatigue, palpitations, chest pain and their debilitating impact on life. Jane herself struggled to gain recognition for her dysautonomia in Scotland. It took years and multiple investigations for her condition to be diagnosed; she was investigated for epilepsy, psychological causes and, despite having a tilt table test which showed signs of the condition, the results were seen as inconclusive.
It was at this point that Jane’s blackouts became worse and she was almost at the point of giving up when she became aware of an autonomic clinic in England that specialised in these conditions. Jane applied for NHS funding but was denied because the condition was not considered life-threatening. Using savings and support from her daughter, Jane crossed the border and became a short term private patient at the clinic in England.
After just three days at the clinic, all tests came back positive for dysautonomia. It was a huge relief for Jane and her family to fi nally get a diagnosis. Now back in NHS care, her condition has been recognised and she has been given psychological support to help. However, she is unable to access the specialist treatment she requires because of the lack of centres which specialise in treating autonomic conditions in Scotland and indeed England and Wales.
Admirably, Jane has not let this defeat her and through sharing her story hopes to raise awareness of dysautonomia and the need for more centres to specialise in diagnosing and treating autonomic conditions.