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The Oneida Daily Dispatch (Oneida, NY) - - Opinion -

Oc­to­ber is Na­tional Dysau­tono­mia Aware­ness Month

A few years ago, our fam­ily didn’t know what that meant. Why did we need to be aware of it? We had never even heard of dysautomo­nia. Un­til our daugh­ter, Lorelei, was di­ag­nosed with a form of it.

Dysau­tono­mia is a broad med­i­cal term used for a group of com­plex con­di­tions caused by a dys­func­tion of the au­to­nomic ner­vous sys­tem (ANS). Ba­si­cally this means the things your body usu­ally does au­to­mat­i­cally stops hap­pen­ing au­to­mat­i­cally. Dysau­tono­mia comes in many forms, but they all in­volve the au­to­nomic ner­vous sys­tem. The ANS is a con­trol sys­tem that acts largely un­con­sciously and is re­spon­si­ble for main­tain­ing your body tem­per­a­ture, reg­u­lat­ing your breath­ing pat­terns, keep­ing your blood pres­sure steady, and mod­er­at­ing your heart rate.

Lorelei’s form of dysau­tono­mia is called pos­tural or­tho­static tachy­car­dia syn­drome (POTS). At her worst, she couldn’t walk across a room with­out faint­ing or hav­ing a seizure. One day she was a com­pet­i­tive dancer and ath­lete, the next she was in a wheel­chair, lay­ing in a hos­pi­tal bed at Golisano’s Chil­dren’s Hos­pi­tal. Wewere sent to car­di­ol­o­gists, neu­rol­o­gists, psy­chol­o­gists; she had to wear a heart mon­i­tor for 30 days; sleep with me­tal discs from an EEG strapped to her head; and have many rounds of blood work, all meant to fig­ure out why our once strong and healthy daugh­ter is now sud­denly so weak and faint­ing mul­ti­ple times a day.

We were lucky – Lorelei was di­ag­nosed in just a few months. Of­ten peo­ple go years be­ing mis­di­ag­nosed or un­di­ag­nosed.

We im­me­di­ately started go­ing to The Body Shop in Sher­rill for phys­i­cal ther­apy. Jeff Brown, the owner and phys­i­cal ther­a­pist, was won­der­ful. He learned about her ill­ness and be­gan work­ing with her mul­ti­ple times a week, at first even re-teach­ing her the ba­sic skills she had lost. As she got stronger, she worked her way up to rid­ing an ex­er­cise bike, then even­tu­ally walk­ing and jog­ging on the tread­mill.

Lorelei was on 14 pre­scrip­tion pills a day at that time. She didn’t take any daily med­i­ca­tions prior to this ill­ness! She is down to only four pills a day now. It’s been 4 years since she was first di­ag­nosed with POTS. She is back in school, play­ing sports, and rarely ever faints any­more. She is lucky; about 25 per­cent of peo­ple di­ag­nosed with POTS can’t at­tend school or hold down jobs and are on some form of dis­abil­ity.

We are so thank­ful she no longer faints reg­u­larly, but with her au­to­nomic ner­vous sys­tem not al­ways func­tion­ing prop­erly, it leaves her deal­ing with a wide range of other symp­toms, in­clud­ing fre­quent aches and pains, feel­ing faint (or ac­tual faint­ing), nau­sea, ex­treme fa­tigue, tachy­car­dia, hy­poten­sion, poor ex­er­cise tol­er­ance, gastrointestinal symp­toms, sweat­ing, dizzi­ness, blurred vi­sion, numb­ness and tin­gling, pain, and (quite un­der­stand­ably) anx­i­ety and de­pres­sion.

So, now our fam­ily knows what dysau­tono­mia is and more specif­i­cally, what POTS is. We don’t judge whenwe see a seem­ingly “nor­mal” per­son with a hand­i­cap park­ing sticker or in a wheel­chair. We hope to make more peo­ple aware of the var­i­ous types of chronic and in­vis­i­ble ill­nesses that so many peo­ple like our daugh­ter are liv­ing with daily. Jackie, Scott and Lorelei

Sav­ille, Sher­rill

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