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Bolanz leads awareness effort on Dysautonomia
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By Thomas Clapper
Dysautonomia Advocate Darcy Bolanz and several local residents affected and families attended the Carroll County Commissioners Oct. 2 meeting to spread awareness of the rare disease and read proclamation.
Bolanz, who’s daughter Elyza has dysautonomia, is one of the leading voices and advocates in Carroll County to bring awareness to this condition.
“Dysautonomia is an umbrella term used to describe several medical conditions that cause a malfunction of the Autonomic Nervous System which controls the automatic functions of the body that we do not consciously think about such as breathing, heart rate, blood pressure, digestion, temperature control, dilation and constriction of the pupils of the eye, kidney function and more,” explained Bolanz. “People living with dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition and in severe cases, death.”
Bolanz asked if any attendees would like to speak, and some did. One resident has extremely low blood pressure and must take medicine 30 minutes before getting out of bed to even be able to get up. For many it is just a chore to get anything done because the pain is always there along with low energy and on top of that, being diagnosed is not an easy task.
One point that was made clear was not enough doctors are educated about this disorder.
“I was recently in Washington, D.C. with Dysautonomia International, and they are advocating for the National Institute of Health (NIH) to give them more money for research and funding,” said Bolanz “There is not enough awareness or financial incentive.”
There is no FDA approved treatment for dysautonomia, so different types of medications are used and in many cases other diagnosis’ made so those affected can get medicine.
One such common dysautonomia form is Postural Orthostatic Tachycardia Syndrome, also known as POTS.
According to http://www.dysautonomiainternational.org/ “POTS estimated to impact 1 out of 100 teenagers and, including adult patients, impacted an estimated 3 million Americans before COVID-19. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more.”
There are many other forms of dysautonomia. For more information on dysautonomia and its forms, visit http://www.dysautonomiainternational.org/.
Commissioners adopted the Proclamation and Commissioner Chris Modranski read it aloud.
“I would like to thank everyone for the knowledge you have given me just now,” said Commissioner Donald Leggett II.
“It is inspiring that you are all here in front of us,” said Modranski. “I would like to thank Darcy for starting the awareness of this. She has been coming to the Board for many years, and her work is paying off. From where we started to where we are now is tremendous improvement.”
Those who attended to support the proclamation alongside Darcy include Brian Bolanz, Elyza Bolanz, Joyce Yost, Meghyn Spencer, Teresa Spencer, Grace Gainer, Mary Gainer, and Sean Speedy.
In an unrelated matter, Regional Planning Director Tom Konst and Hemp Rd. residents appeared to discuss a name change from Hemp Rd. to Holiday Rd. in Rose Township at the Oct. 5 meeting.
Konst spoke to the EMTs, Sheriff’s Office and the postal service who said they were having trouble getting there. He noted that the Hemp Rd. street sign is also the most stolen sign in Carroll County.
“I just think it would be best for the protection of the people,” said Konst.
Four residents attended the meeting and said they are against the name change because they haven’t had any problems being located and also they would have to change their driver’s license, documents and other things. One other point is EOG paved a road which leads people to believe that the newly paved road is where houses are, but the houses are on an older road.
Modranski motioned to table the discussion until they see the road themselves.
“I don’t think it would be right to make any decisions on this without personally driving the roads and seeing for myself,” said Modranski. “I would like to table this until next Thursday so we have the opportunity to get out on those roads.”
The other commissioners unanimously agreed.
“My most important things of consideration are safety and efficiency, the signs not staying up and the paving being misleading,” said Wirkner.
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