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Patients in the Spotlight: Tessa Clark

Family Learns Lupus Can Be Managed

The diagnosis was devastating, and Bobbie and Steve Clark were taking turns.

One would stay in the hospital room, showing a strong face for their daughter Tessa, while the other took to the hallway to safely shed their tears.

“I was praying it wasn’t going to be lupus,” said Bobbie Clark, Tessa’s mother. “We know it could have been worse, but a 12-year-old Tessa Clark— you don’t want to think she’s got a lifetime disease that can get worse or become fatal at any time.”

But the scary, uncontrollable systemic lupus erythematosus that they read about on the internet isn’t always the disease experienced by patients. After speaking with David Siegel, M.D., M.P.H., chief of the Division of Pediatric Rheumatology at UR Medicine’s Golisano Children’s Hospital, they learned that there was a chance that Tessa could go back to living a normal life — if her condition responded to treatment.

The Clarks hoped that Tessa would respond.

An unexplained fever

Problems had started a few weeks earlier, on a weeknight in October 2012. Tessa spiked a fever, and though it subsided quickly, she returned home from school the next day exhausted and upset.

“She was very tired when she came home from cross country — so tired that she started to cry,” said Bobbie Clark. “She said she’d done terrible at practice.”

The fever returned. It would come and go over the next 8 days, and after a kidney ultrasound showed severe dehydration and the beginning of kidney damage, Tessa spent a night getting IV fluids in the emergency room at Golisano Children’s Hospital.

Further blood tests two days later revealed dangerously high potassium levels, and Tessa was again admitted to the children’s hospital. The symptoms were still ambiguous enough Tessa runningthat a wide variety of causes were possible.

“We were a wreck,” said Bobbie Clark. “We were taking in so much information and seeing so many specialists.”

Tessa was brave throughout much of it. The only time she needed to be distracted was during blood draws — it seemed like she sat through a million of those.

“I was scared of the needles,” said Tessa Clark. “They were running out of space so they were going to start using my ankles.”

After a week without a diagnosis, doctors decided to run an Antinuclear Antibody (ANA) test. The test, which searches for autoantibodies present in the blood, comes back positive 97 percent of the time in patients with lupus, an autoimmune disease which causes the body’s immune system to attack its own organs. Tessa’s came back positive. Her parents, having read several harrowing accounts of the disease online, prepared for the worst.

“You can only imagine what goes through your mind: ‘Is this it? Is this the end?’” said Steve Clark. “All these things were coming up and all we’d thought, at the beginning, was that she had a fever.”

Starting treatment

But Siegel, who was called in after the ANA test, told the Clark family that lupus can come in many shapes and sizes.

“Lupus can be a very severe illness and it can be a very manageable illness,” said Siegel. “When you read about it on the internet, you wouldn’t really know that there are people out there with lupus that have rarely missed a day of school, and they take some medicine, and feel fine.”

After Tessa's team consulted with Megan Rashid, M.D., a pediatric nephrologist at Golisano Children’s Hospital, Tessa went for a kidney biopsy, which showed a serious form of kidney disease. This meant Tessa’s lupus did appear to be on the more serious end of the spectrum, Siegel said, but Tessa hadn’t started treatment yet, and there was no way to know how she would respond.

Throughout the early stages, the Clarks stayed in regular contact with both Rashid and Siegel — first in the hospital, and then by phone — and said they greatly appreciated their approach.

“Tessa really likes Dr. Rashid, and Dr. Siegel does have a gift — a gift of talking to you and not candy-coating things, but also not making everything seem like the end of the world,” Steve Clark said.

First, in consultation with Rashid, Siegel started Tessa on prednisone and some other medications used in lupus, as well as vitamin D and antacids, the latter of which provided a source of calcium — important when a patient is taking prednisone.

“The Tums were the worst!” Tessa said. “They tasted like chalk.”

But her fever came down almost immediately, and after just a Tessa trackfew weeks, she was back at Spry Middle School. Today, she’s not taking any prednisone, and is on just small amounts of mycophenolate and plaquenil.

“Her kidneys are functioning great, as are her body’s other organs,” Siegel said. “She’ll probably remain on some low-level preventive treatment for a long time, but not treatment that carries any significant risk of its own problems.”

No restrictions

Now 14 years old, Tessa has returned to running cross country and track.

There are a few things she’ll always have to be wary of — such as the fact that her lupus can be triggered by sunlight exposure, so she always has to wear lots of sunscreen. And her parents know that a sore throat could always be indicative of something a little worse.

 “We’ll never look at a fever the same way, and we’re never relaxed about it, but we try not to hover and make her feel like a sick kid. We just kind of watch her,” Bobbie Clark said

But right now, there are no restrictions on what she’s allowed to do. And though Tessa’s diagnosis will always be with her, the Clarks are grateful that she was at Golisano Children’s Hospital in the care of Siegel and Rashid.

“You can never really talk about a hospital and say it was a positive experience,” Steve Clark said. “But I can’t really say enough good things about it. The doctors were terrific, the nurses were terrific, and they treated Tessa as if she was an important person in their lives. How can you get better than that?”

 

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