Mysterious Autoimmune Disorder Attacks Teenage Girls in Texas

Athletic, active teenage girls who excel in school are not who you would expect to fall victim to a debilitating and difficult to diagnose illness. But it is happening to a group of mostly girls, on the north side of San Antonio.

Most of them live along the I-10 West corridor between Camp Bullis all the way up to Boerne.

“She never had headaches. She was never sick or went to the doctor,” said a local mother who prefers not to be identified because of the stigma attached to her daughter’s rare disease. “In April 2009 she started having severe migraines,” said the woman who we’ll call “Cindy.” She is the mother of a 15-year-old girl with neuroimmune syndrome.

“She was having a seizure-like activity, but it wasn’t epileptic,” says Cindy about her daughter’s symptoms.

Then came the chronic fatigue, nausea, dizzy spells causing blackouts, and stomach problems. She says the illness is so unusual, some doctors accused her daughter of faking it.

“We had one…We’d get, ‘This is all in your daughters head, nothing wrong with her. Get her a good psychiatrist,'” Cindy said.

She took her daughter to one doctor after another with no definitive diagnosis.

Then she discovered her daughter wasn’t the only one experiencing the illnesses.

Several of her daughter’s childhood friends were also coming down with similar unexplained symptoms.

“Some of them to the point of not being able to do traditional school – where they were needed some accommodations for their fatigue,” says Cindy.

“Primarily, these are teens between twelve to eighteen or nineteen years of age,” says Dr Mahendra Patel, a pediatric hematology oncologist in San Antonio.

Over the past fifteen years, Patel says he has seen dozens of cases involving teenagers and autoimmune disorders.

“Autoimmune disorders, per say, are rare disorders in the pediatric population,” he explained.

Autoimmune disorders are chronic illnesses that occur when the body’s immune system attacks its own organs.

“The number of cases I am diagnosing is a lot more, and incidence rates are increasing,” says Patel.

He says the most common autoimmune disorder is rheumatoid arthritis. But there are others like chronic fatigue syndrome, postural tachycardia syndrome or POTS. This condition affects the heart rate, Dysautonomia, Epstein Barr virus, Lupus, and Wegener’s granulomatosis which is an inflammation of the blood vessels that affects the nose, lungs, kidneys or other organs.

Patel says only recently have doctors begun to understand these illnesses and why they may develop in young people,. They are also learning how to treat them.

“Now, with the constellation of symptoms [they can be put into] a syndrome name, and a fairly good test to measure it, the medical team is now accepting the diagnosis,” says Patel.

He says medical experts now know the illnesses can be traced back to an infection the teens may have had, like mono, which is a virus. But they can also be bacterial, fungal, or parasitic. That’s why Patel says the best way to prevent these infections is to avoid sharing beverages, or hand towels, to thoroughly clean sporting equipment, and always wash your hands or use hand sanitizer.

While Cindy still can’t explain why her daughter developed an autoimmune disorder, coping with this has been a journey. The strain has been lessened thanks to a support group she has started with others who share their experience.

“Those moms or parents are in the same place I am,” she said. “I’m just looking for those pieces of the puzzle…that that picture will become more into focus and give an authentic accurate perceptive of what we are dealing with.”

Cindy is at the Mayo Clinic this week having more tests run on her daughter. She is hoping specialists there can reach a more specific diagnosis on what her daughter has so they can treat it more effectively.

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