Cuyahoga Falls -- On Monday (Oct. 10), Mayor Don Walters proclaimed October Dysautonomia Awareness Month.
After reading the proclamation to members of City Council, his administration and the public, Walters presented a copy of the proclamation to Alicia Hopkins, a city resident who was diagnosed with dysautonomia.
Alicia has been working to bring awareness of this disease to the public. She said she posted a message on a local Facebook page seeking others in the city with the same condition, and seven people came forward.
Dysautonomia is an umbrella term used to describe various medical conditions that cause a malfunction of the Autonomic Nervous System, according to a press release. The Autonomic Nervous System controls the "automatic" functions of the body that people do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.
People living with various forms of dysautonomia -- autonomic nervous system disorders -- have trouble regulating these systems, which can result in light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
"I chose to raise awareness because I know that dysautonomia affects others in my community," Hopkins told the Falls News-Press. "I know it's challenging to deal with based on my personal struggle with this condition. Any support that people can offer will help down the road. Dysautonomia isn't rare but it isn't heard of either. By raising awareness it opens doors for community education, support and research opportunities."
Hopkins said her "biggest issue" is her blood pressure drops so low when she stands that she faints, adding her insurance doesn't cover her medications.
Another city resident who is dealing with this same disease contacted the Falls News-Press by email. Renee Hedges said the Cleveland Clinic is the closest hospital to Cuyahoga Falls that can properly diagnose and treat patients. It takes an average of six years to get properly diagnosed, she said.
It is the goal of Dysautonomia International to reach as many primary doctors as possible, so patients get proper care sooner, according to a press release. Something as simple as taking blood pressure and heart rate supine, sitting and standing can make a huge impact in identifying patients with dysautonomia.
Hedges said she underwent many hospitalizations and misdiagnoses to get the correct answers. Dysautonomia can be triggered by a virus, pregnancy, previous illness, autoimmune conditions and surgeries, she said.
More than 70 million people worldwide live with various forms of dysautonomia, according to a press release. People of any age, gender or race can be impacted. There is even a pediatric population. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness among the public and within the medical community.
"My goal is to raise awareness in our community, so another person doesn't have to suffer like I did," Hedges said.
For more information, visit www.dysautonomiainternational.org.