Young patient powers past her disease to follow her dream

After Kara Miller woke up with blurry vision she couldn’t blink away, her primary care doctor spotted something that would change her life.

Kara, then 17, had a lesion on one of her optic nerves. Not only did the damaged nerve explain why she was seeing double, it was telltale evidence of an incurable and often disabling disease — multiple sclerosis (MS). For many people, a vision problem is its first sign, according to the National Multiple Sclerosis Society.

Barely a year earlier, Kara had been diagnosed with a rare genetic disease, and learning she also had MS could have been devastating. But the 19-year-old isn’t letting it derail her dreams.

She’s a junior at Catawba College in Salisbury, North Carolina, where she and her parents, Jeff and Trina Miller, live. Her goal: a bachelor’s degree in psychology with a double minor in sociology and counseling. After that, she plans to go to graduate school, become a forensic psychologist in the judicial system, have a family and enjoy a long, fulfilling life.

With better treatments for MS emerging all the time, those are realistic aims, according to her neurologist, Dr. Nancy Rosales of Novant Health Neurology & Sleep – Rowan in Salisbury. Monitoring her health regularly will be the key.

“Kara has a diagnosis that, for me, takes a lot of courage, and she’s a very resilient patient,” Rosales said. “She’s been dealing with important medical issues since she was younger, and I see how motivated she is to study and continue on with her life.”

Besides MS, which attacks the brain and spinal cord, Kara has a potentially life-threatening disorder called hereditary angioedema (HAE) that causes painful swelling attacks. Though she was born with HAE, it wasn’t diagnosed until she was 16, when unexplained abdominal pain led to a blood test. The results revealed that she’s missing a protein that helps fight off inflammation.

The swelling attacks come without warning — sometimes shutting Kara’s nostrils while she sleeps, making it hard to breathe. Her goldendoodle service dog, Oaklee, sleeps nearby, ready to get help at the first sign of trouble or on Kara’s signal — a closed palm over her chest.

Doctors suspect Kara has had MS since at least eighth grade. That’s when migraine headaches led to her first MRI brain scan.

The resulting images provided a benchmark for comparison when Kara arrived at Rosales’ office in 2021 with fuzzy vision and her doctor’s notes about a lesion on one of her optic nerves. Rosales, who could see that Kara’s eyes weren’t working together, immediately ordered new MRIs. They found the telltale lesions of MS on her brain and spine.

Like hereditary angioedema, MS is an autoimmune disease, a condition in which the body’s defense system against germs and viruses mistakenly attacks the body itself.

In MS, its target is the central nervous system. MS damages myelin, the insulation that protects nerves, disrupting signals to and from the brain and within it. The lesions that result can cause numbness, tingling, mood changes, pain, fatigue, blindness and/or paralysis.

Kara has the most common form of MS, relapsing-remitting, in which symptoms come and go, sometimes leaving new lesions and disability in their wake.

Controlling stress is key

For Kara, MS has created problems on both sides of her body. Her right leg and left hand are weak. She wears a brace to help her walk without dragging her foot and at a physical therapist’s urging, she works out with ankle weights to strengthen her leg. She picks up objects with her right hand, not her left, to avoid dropping them. She keeps track of 14 medications on a kitchen chalkboard.

In other words, she copes.

“She’s very determined — she remains positive at some of the moments that I’m thinking must be difficult for most people her age,” her mother, Trina Miller, said, choking back tears. “Still being a teenager, still trying to accomplish her goals and dreams, she inspires me every day.”

Kara has a practical reason for focusing on the positive.

“Stress makes both of my health conditions much worse, for sure,” she explained. “If I cry, my eyes will swell, so I’ve learned to settle my emotions.”

One way she counters stress is making time for activities that give her joy — like volunteering at Calvary Baptist Church in Salisbury to fill shoeboxes with toys and toiletries for the needy. Sometimes, she signals Oaklee to fetch her phone so she can calm herself with uplifting music. Extended family, friends and her boyfriend of two and a half years, Owen Sides, are a supportive team. It all helps, she said.

“I still try to get to classes and do everything,” Kara said. “But sometimes, especially whenever I’m having a bad day, sometimes I think I’m going to end up falling behind.”

Medication called Tysabri is helping

But not if Rosales can help it. Her focus is on preventing further harm to Kara’s nervous system and further disability.

After weighing alternatives, the Millers chose to begin Kara’s MS treatment with a twice-a-day pill. The regimen was convenient and had a lower risk of side effects than some alternatives. But it failed to prevent new lesions. So Rosales recommended a more aggressive approach — a monthly intravenous medication.

Kara recently had her third infusion of Tysabri at Novant Health Forsyth Medical Center in Winston-Salem. She schedules appointments around her Tuesday-Thursday classes and sometimes brings her homework to pass the time. Rosales is optimistic that the infusions will pay big dividends for the long-term.

“It’s very rare for a patient to get a new lesion on Tysabri,” she said. “We do lab work every three to six months, and imaging at least once a year.”

Time is on Kara’s side: Her disease was found earlier than most and in young patients, the brain has more plasticity — an ability to rewire itself around lesions. And, as people with MS age, the risk of new lesions and relapses eases.

“She still has some years to go for that,” Rosales said. “That’s why it’s so important to protect her now that she’s young so she doesn’t accumulate disability.”