Postural Orthostatic Tachycardia Syndrome

Testimonial

Sarah’s Story

Sarah’s Story

“You walk in and from minute one there is no question that your whole illness is validated, they understand, they care, they want comfort for you, they want to explain things to you and they are not out to just put Band-Aids on symptoms, they are out to get to the underlying causes of the horrible day-to-day living that you are experiencing”

Sarah came to POTS Care after suffering for over 6 years with a diagnosis of POTS and EDS. She had been to countless specialists, including Mayo clinic, searching for answers. Sarah suffered from intense pseudoseizures, and we were able to locate the underlying cause of intense symptoms, including her intense POTS symptoms. Sarah leaves POTS Care with a treatment plan in place, and hope of returning to work as a nurse.

INTERVIEWER : Thank you for talking with us today, Rebecca (patient’s mother). Could you please tell us a little bit about Sarah’s journey with her illness?

Patient’s Mother : Sure. Six years ago Sarah was a practicing RN in a hospital, and was at work one day when she was suddenly taken by strange symptoms and feeling dizzy. The next thing she knew she was having a seizure-like episode. In the beginning, it was isolated and she could have an episode and it could be two weeks before it happened again, but gradually over time it became more or less a daily situation. She went on leave from work for a year, they hung in there with her, but it became apparent that Sarah was not going to work, so here we are almost six years later. We have been through all the specialists. She has been living at home with her parents, she had to give up work, all of it, and if anybody who lives with this kind of illness knows it is extremely isolating and so you are constantly looking for anything that would help.

INTERVIEWER : Was your time at POTS Care different than previous care you all have received?

Patient’s Mother : We came across POTS Care and we have spent the last week here and I have to say this place is like its own little island of care and good feeling. You walk in and from minute one there is no question that your whole illness is validated, they understand, they care, they want comfort for you, they want to explain things to you and they are not out to just put Band-Aids on symptoms, they are out to get to the underlying causes of the horrible day-to-day living that you are experiencing.For us it has been life changing and I can say that as a mother, who has had to watch this go on in her child for so long, I have felt all week long that these people have taken a load off my shoulders by completely understanding what Sarah is living through and because of that I can back off as a mom and just trust them to take care of her. So we are walking out of here with a plan and we are walking out of here with real hope.

INTERVIEWER : Thank you for talking with us today, Rebecca.



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