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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Meet the member - Onva's Story by Chelsea Goldstein


Goldstec

Onva_2.jpg.a3482a006635533fbf46c602ba1fe455.jpgAt age thirty-eight, Onva was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), after living with thirty years of undiagnosed symptoms. She remembers fainting as early as first grade, often when standing in the lunch line at school. Her mother took her to several doctors and she went through a myriad of tests. At one point she was mistakenly prescribed anti-seizure medication, and at another time her mother was told that she was just an anxious child.

For most of her life, Onva thought of her symptoms as “normal”  because her mother, grandmother and several extended family members all suffered from fainting, presyncope, hypermobility and/or gastric complications. However, when her son began to develop similar symptoms, she decided that “This is going to stop with his generation, or at least I am going to find out why it's happening and make life easier for him.”

Her online research led her to believe that both she and her son had POTS, and that he needed a tilt table test to be officially diagnosed. Unfortunately, local doctors said he was too young to be tested for dysautonomia. Instead of giving up, she sought a diagnosis for herself with the belief that she could, at least, help him manage his symptoms if she better understood her own.

Onva’s diagnostic process is all too familiar to those of us with POTS. She incurred high medical bills, she was put on medications like antidepressants and steroids that exacerbated some of her symptoms. Physicians regularly dismissed her as anxious, as from her childhood. Her turning point came when she found a primary care provider who helped wean her off medications that were ill-suited for her and guided her in seeking a true diagnosis.

Once diagnosed, she learned to increase her fluid and salt intake once she was able to attribute her symptoms to POTS. Onva_1.jpg.85354fb122168b106e7b2900ed582088.jpgShe also understood her extreme heat intolerance, and the source of her life-long fainting, especially when she stood in long lines. Though her grandmother had passed, she was able to understand some of her symptoms too. She figured out why her grandmother had pre-syncope symptoms when standing in the church choir, and how she needed to wake up several hours early to give her body time to acclimate. Most importantly, an official diagnosis enabled her to find an autonomic specialist who was willing to treat both her and her son.

Though Onva’s physical abilities are limited by POTS, she feels that these shared experiences of illness have given her tremendous love and gratitude for her close friends and family. She has been able to support her family by working in a salon with an owner who understands she may need sick days, a cool environment and later work hours. Most importantly, her son’s symptoms gave her the strength to be a warrior for her family. In this way, she has helped both herself and her son get proper treatment, and she has brought the gift of “knowing” to all of her family members who have lived with undiagnosed symptoms. This experience has shown her that, together, her family can overcome anything.

Onva, as an individual with Dysautonomia, as well as a parent of a child with POTS has strong insight into this disorder. She encourages us to shed the shame we have about our bodies. If we need to sit, or lie down, to alleviate symptoms we should do so, regardless of where we may be. She also encourages parents to communicate openly and often with their children who have chronic illness. This communication, she says, provides children with the confidence to share all of their symptoms. Parents are, then, able to become the strongest possible advocates for their children. Finally, her lifelong experiences with POTS have helped her remember that while doctors are important partners, we know ourselves and our needs best.


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