This Is What Tourette Syndrome Looks Like

"Are you sure?" I asked my daughter before writing this column.

"Yes," she said resolutely.

Veronica is profoundly grateful for all the prayers, kindness and advice from strangers, friends and family alike that she received earlier this summer when I first told you about her plight. We hope sharing the rest of her story can help pay it forward in some way.

In May, she stopped breathing normally. Describing the condition in words cannot adequately capture how torturous it was: She felt "air hunger" with every inhalation. At first, it looked and sounded like a gentle sigh. But the small gasps soon morphed into a horrible "stridor," up to 30 to 40 times a minute, every minute, every hour, every day.

As we faced agonizingly long wait times to see doctors, we turned to crowdsourcing and CrowdMed.com. We heard from many other parents of children with mystery ailments and chronic illnesses on similar all-consuming searches for answers. Was it anxiety? Vocal cord dysfunction? A pulmonary embolism? Lyme disease? Food allergies?

Along the never-ending journey, Veronica was diagnosed with postural orthostatic tachycardia syndrome and joint hypermobility, which led to an inconclusive side investigation into Ehlers-Danlos syndrome.

The days and weeks passed in slow motion. Veronica remained bedridden. She lost sleep. She lost friends. She felt "like a zombie" and battled "brain fog." An aspiring doctor, she had to quit her volunteer job at a local hospital's oncology ward. Instead, she spent the summer as a patient in a blur of medical clinics and diagnostic labs, shuttling between experts in cardiology, pulmonology, rheumatology, genetics and neurology.

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