`Paint and Sip' event to boost Dysautonomia Support Network

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Maureen Lowe was an emergency room technician in 2009 when she started experiencing extreme fatigue, weakness, and dizziness.

Her doctor suspected she had contracted mononucleosis at work. She followed her physician’s advice, changed shifts, and rested, but she began fainting at work shortly thereafter. She took a leave and switched to the less physically demanding pace of the outpatient clinic.

But her symptoms continued to worsen. A nurse suggested Lowe have a Tilt Table Test after seeing her struggle. After three years of uncertainty, this test provided a diagnosis – postural orthostatic tachycardia syndrome, or POTS, a form of dysautonomia.

That term refers to several conditions involving the autonomic nervous system, or ANS. Patients experience unstable heart rates and blood pressure, body temperature regulation issues, fainting, chronic fatigue, dizziness, headaches, and more. Symptoms are often unpredictable and disabling.

Today, Lowe better manages her symptoms. She now works part time and recently enjoyed her first cruise since being diagnosed.

“Being a member of [the Dysautonomia Support Network, or DSN] has enabled me to feel less socially awkward,” Lowe said. “The group helps new members who are struggling with the difficult journey of being accurately diagnosed and symptom management.”

DSN was founded in Rhode Island in 2012 by Amanda Aikulola. It is a patient-focused organization providing support, resources, education, and advocacy for patients affected by dysautonomia and related conditions. Leaders are trained to help patients through every stage of their journey, from diagnosis to advocacy.

“Patients with complex medical conditions need comprehensive intervention,” Aikulola said. “These patients have better outcomes with education, resources, support, and a sense of community.”

There will be a “Paint and Sip” fundraiser for DSN on Friday, June 10, at Paint The Town Studio, located at 1150 Oaklawn Ave. The cost is $35 per person. There will also be raffles.

For tickets, or further information, contact Aikulola at 401-573-2621.

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