West Chester family battling little-known disease is taking steps to raise awareness

It has been a challenging and occasionally frustrating decade for the Fledderjohn family of West Chester, who have worked tirelessly to accommodate for the medical needs of their son, Alex.

His diagnosis with the rare disease Anti-NMDA receptor encephalitis has led the family to provide full-time for him. Because they struggled at times to find information and support for the disease, the family has organized an event Saturday to bring people together and answer questions to raise awareness.

Alex was a very bright student in high school, taking multiple Advanced Placement courses, before earning a scholarship at Ohio State University. He graduated in the Spring of 2009 with a bachelor’s degree in Psychology, with the hope of leading people to live their best life.

“Alex had a smile that brightens any place he entered,” said Therese Fledderjohn, Alex’s mother. “He was an avid reader and loved to learn. His heart was always in the right place.”

Yet, around this time, Alex started to show symptoms of illness, and doctors struggled to pinpoint the cause and diagnosis. Therese said that her son lost around 20 pounds that fall.

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Following seven years of searching for answers and sporadic symptoms like losing balance and even the ability to speak, Alex was diagnosed with Anti-NMDA receptor encephalitis, a disease which causes antibodies to attack NMDA receptors and can affect any child or adult.

The Anti-NMDA Receptor Encephalitis Foundation says these receptors are needed for “judgment, perception of reality, human interaction, memory, and the control of unconscious activities,” like breathing and swallowing.

It took six neurologists to finally make the diagnosis, which Therese says is due to a lack of information on the disease and its wide range of symptoms that often mimic other diseases.

Anti-NMDA Encephalitis has only recently been acknowledged by the medical community, first identified by Dr. Josep Dalmau and colleagues from the University of Pennsylvania in 2007.

To care for Alex, now 32, the Fledderjohns are constantly monitoring him at their home.

“To see him go from that to this has just been … ‘Wow,’” said Therese, who added the impact the illness has on Alex’s sleep schedule. At times, he will sleep for 32 hours straight, while at others he will be awake for 24 hours.

This disease is considered rare. Therese believes more diagnoses will be made as the medical community learns more about Anti-NMDA Encephalitis.

This shortage of information has made the Fledderjohns often feel alone, which Therese believes many families dealing with the disease are also facing.

“It is often described as a lonely road,” Therese said. “I don’t want anyone to be alone.”

To help connect these families and educate the public on Anti-NMDA Encephalitis, the Fledderjohns are holding a fundraiser and an educational awareness session Saturday in the Plaza Room of the West Chester Hospital.

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Doctors Stephen Rush and Elizabeth Dragan from UC Health, along with Kimberley de Haseth from the Autoimmune Encephalitis (AE) Alliance, are the event’s keynote speakers, and they will lead a question-and-answer section.

The Fledderjohns created “Team Fledderjohn” to advocate for Alex and others with this disease. They will be accepting raffle basket items and selling their “Walk On, Walk On Together” T-shirts, stickers, and tote bags. Proceeds of the event will go to AE Alliance.

The event will start at 2 p.m. and end at 4 p.m. on Saturday at West Chester Hospital, 7700 University Road in West Chester.

For more information on Team Fledderjohn and the disease, please email them at teamfledderjohn@gmail.com.

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