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Raising awareness and support for issues with EDS & Chiari

Raising awareness and support for issues with EDS & Chiari (WKRC)

CINCINNATI (WKRC) - Mother Nicole Stout and her son will deliver the game ball Friday night, June 24, as part of Pete Rose Induction Weekend at Great American Ball Park.

They are doing it to continue raise awareness for two painful conditions that Mayfield Clinic doctors working at Good Samaritan Hospital say can be treated. When Local 12 News first met up with Stout she was sharing her story of living with Arnold Chiari Malformation and Ehlers Danlos Syndrome.

Stout said, "Heart palpitations, shortness of breath, unbearable migraines; I thought my head was going to explode."

Those who have the symptoms started a Facebook "zebra" support group.

Angela Pennington, a member of Cincy Zebra's, said, "A medical zebra is a person that has a kind of rare or unknown chronic illness, kind of an invisible illness. Medical professionals are kind of taught when you hear hoof beats look for horses while we're the zebras."

A lot has happened since that story, Nicole said hundreds reached out to her on Facebook and some are getting follow up help.

Jennifer Claybern saw Nicole's story, "I was like I have that"

Not only did Nicole reach out and to Jennifer when she asked for help, Nicole directed Jennifer to Dr. Bill Tobler who Local 12 met up with as he was getting ready to perform the same pain relieving brain surgery on Jennifer for Arnold Chiari Malformation as he did for Nicole.

Dr. Tobler of Mayfield Brain and Spine said, "We're not sure what causes it, but part of the cerebellum which is the back part of the brain actually descends through that opening."

Dr. Tobler said that causes spinal fluid to constrict causing terrible pain, "The goal of the surgery for Arnold Chiari Malformation is to relieve that constriction."

As Jennifer was wheeled into the operating room Nicole wanted others to know what she told her when she felt no hope there is always hope and friends who care. Nicole stayed by Jennifer's side all night following her brain surgery. Nicole told Local 12 News that Jennifer was through surgery and recovering well.

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