The Column: Jones overcoming rare PANDAS disease

Every athlete has a story, even if he or she isn’t the star.

Rheanna Jones has a compelling one to tell.

The Rantoul Township High School junior is a survivor of a rare disease that she is still battling.

The disease, known as PANDAS, is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

PANDAS is an autoimmune reaction to fight off an infection, most commonly group A beta-hemolytic streptococcal infections. The body then attacks the bacteria, but accidentally attacks the brain’s basal ganglia, the part that organizes voluntary motor control, procedural learning habits, cognitive and emotional functions.

With the basal ganglia affected, it could cause Obsessive Compulsive Disorder (OCD) and or tic disorders. Other symptoms could include emotional lability, personality changes, ADHD, loss of motor skills, sleep disorders, hyperactive senses and separation anxiety.

PANDAS is most commonly found in boys 5-10 years old.

Few doctors know how to diagnose and treat the disease, as Dr. Denis Bouboulis of Connecticut told ABC News in 2011,  “It requires doctors to have an expertise in four areas: neurology, psychiatry, immunology and infectious diseases.”

PANDAS could rear its ugly head after a strep throat infection, like the one Jones experienced back at J.W. Eater Junior High.

“It initially began in sixth grade when she was on the honor roll in the first quarter and then got strep throat, and things started downhill from that point on,” her mom, Rose Church, said.

Jones began to not do as well in school, and experienced anxiety and tantrums.

The dark days. Jones used to be a star athlete in gymnastics (won national awards), volleyball, basketball and baseball.

At the beginning of eighth grade, Jones said she noticed her symptoms worsening.

“I broke my right pinkie, and usually I would be out there ready to go in minutes,” Jones said. “Believe it or not, when I got back on the court, everything was gone. I didn’t have any fundamentals. It was kind of a slap on the face because I never sat on the bench. From then on I knew because I had to sit back and watch people who are perfectly capable of doing what I was doing, and not being able to perform anymore.”

Jones then began experiencing severe separation anxiety, where she would call her mom a few times a day to pick her up from school.

“I was like a lost puppy,” Jones said. “When I would have problems, I needed mom. When I would have an argument, she would push me away. The more we would argue, I would need her more, but she would push me away because she was frustrated. I seriously became a melting mess. I pushed her away, but I meant ‘Come to me,’ but I couldn’t communicate that. I didn’t have a filter. Everything I needed to say didn’t come out right.”

She also began missing school due to illness, prompting a teacher to ask if she were a hypochondriac.

At the beginning of freshman year, Jones had to drop out of high school, sports and her social life because her symptoms worsened.

Church said her daughter would have really low points where she would lash out at her, her father, Roger Jones, and her stepfather, John Church. Rheanna Jones would threaten to harm herself or others.

“We had some really, really dark days when Rheanna started high school,” Church said. “She didn’t want to be alive. She said numerous times, ‘Why me? Why did God do this to me? And I wish I never existed.’ It was a scary time for all of us. You are going through life with a very normal child who is social, athletic and an intelligent girl, and then all of a sudden turns into a totally different character.”

One terrifying incident Church said happened was her daughter got hold of knives and was going to harm herself or her mom.

“I guess it’s a blessing not to remember,” Jones said. “I think it’s a good thing. One thing I do remember is what I felt.”

Jones went to numerous doctors who thought she had a mental illness, and even to a psychiatric ward for protect herself from self-harm.

The recovery. Jones’ aunt, Theresa Hardy, did some research online and found a child who had the same symptoms as Rheanna.

He had PANDAS.

Jones and her parents went to Dr. Miroslav Kovacevicm, a specialist in Chicago.

Kovacevicm is one of the few in America who can diagnose the disease, and he talked to her for a few minutes. She wasn’t confident in finding out what ailed her because other doctors let her down.

“He walked out there, he shook my hand and looked into my eyes,” Jones said. “He had me diagnosed right away. He told my parents ‘You have no idea what kind of hell this child goes through.’ That’s what spoke loudest because I didn’t have to tell this doctor anything, and he knew. There was a weight off my shoulders because I wasn’t crazy.”

Kovacevicm gave the Joneses two-weeks worth of antibiotics and said if she showed improvement, then she has PANDAS.

“In four days, she came bounding down the stairs and said, ‘Let’s go shopping,’” Church said. “That’s the Rheanna we all remembered.”

Jones continues to take those antibiotics, and she has to for probably a three- to five-year period. She recently battled mycoplasma pneumonia for 10 days. Doctors took her off the antibiotics, and the symptoms came roaring back.

Jones said her sister, Carson Church, and best friend, Kaylee Denton, have helped her through her recovery.

On weekends, Jones requires a large amount of sleep so she can remain healthy.

Part of her recovery includes going back to school, where she lost most of her math and organizational skills.

“She will need intensive help to get courses like geometry and chemistry,” Church said.

Jones still possesses strong writing and art skills, and wants to go to college.

“I want to go somewhere where I could do well, start without any holdups like high school and play sports,” Jones said. “I don’t want it to be a small school, but if that’s the only place I could get back on top, I’ll do it.”

Church said the school has done a great job helping Rheanna. Her psychologist, Keri Powell "has been amazing," and Jones wants to pursue a career in counseling.

As for sports, Jones has slowly recovered her motor skills and gotten reacclimated to the athletic skill required to perform after struggling on the bench. She even made the starting varsity squad as the volleyball’s setter.

Jones’ mother cried when she saw Rheanna start against Monticello Sept. 3.

“I’ve always been a step ahead of the game,” Jones said. “Now, everyone has caught up, so I’m level now since I was out. It’s hard not being on the covers of newspapers with my friends because that’s where I was. I’m going to get there again. To be back on that court in the starting lineup with an amazing team and an amazing coach (Traci Riddle) is great.”

Church said coaches have to understand Rheanna will have some health issues that will slow her down at times, but she will give her total effort every time, even if it’s 80 percent that day.

Awareness. Jones wants to spread awareness of PANDAS, and its similar strains, PITAND (Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder) and PANS (Pediatric Acute onset Neuropsychiatric Disorder).

In May, she bravely told her story on WCIA 3, and that spread awareness to her teachers and friends at school.

Her classmates started a hash tag on Twitter called #RespectForRheanna in response to the video.

“When the video was released, my friends saw it and were like, ‘Oh my gosh, Rheanna, are you OK? I had no idea. How did you get through it?’” Jones said. “I was like I had no choice. There’s not a day where it doesn’t hit me.”

Jones said she hopes she can prevent even one child from going through what she went through. The news segment led to one child receiving the correct diagnosis.

The 5-foot-7 setter said she has become more tolerant and accepting of others, and tries to understand where they are coming from.

“You never know what happens behind closed doors,” Jones said. “I looked fairly normal on the outside, but I was disintigrating on the inside. You could look at someone and tell them what you think about them. If it’s bad, you’re going to tear that person up. If you’re like ‘oh my gosh, she’s psychotic’ That’s what people told me. When it comes to the kids who have medical issues like bipolar or multi-personality disorder, whether they want to admit it or not, are dying on the inside.”

Gov. Pat Quinn made today PANDAS/PITAND/PANS Awareness Day in Illinois, and more information can be found at

Jones said throughout this horrific experience that she calls a severe brain trauma, she thinks its a blessing in disguise that gave her and her family perspective.

“God gives His toughest battles to His toughest soldiers,” Jones said. “It’s everywhere I’m at — in my room, on my phone, in my binders, When I’m in my darkest moments, when they do arrive, I have to constantly remind myself that everything happens for a reason.”

Jones wants others to remember she is still a teenager who is like them, and she doesn’t want to be treated different.

During the interview, she appeared like any other 16-year-old girl. She cracked jokes, liked to talk, loves her chocolate candy and has big dreams and aspirations.

Rheanna has gone through a traumatic health experience, but she came out stronger than ever.

“It’s been a humbling experience, and she’s turned into such a beautiful young lady,” Church said. “We’re so proud of her.”

I’m proud of you too, Rheanna, and wish you the best in your continuing recovery.

Categories (3):Prep Sports, Volleyball, Sports


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