Editor's note: This popular story from the Daily Briefing's archives was republished on Aug. 20, 2019.
Kimberly Ho, a nurse at Children's National Medical Center, spent two years accompanying her mother to medical appointments to get to the bottom of a series of perplexing symptoms—but then Ho's training led her to a diagnosis that changed the course of her mother's treatment, Sandra Boodman writes for the Washington Post.
How to address the needs of your rising-risk patients
Le's mysterious symptoms
Ho's mother, Tuyet Le, began experiencing incredible pain in July 2015 when she developed genital ulcers.
Ho at the time was in nursing school at Towson University, and her mother, a Vietnamese immigrant who speaks little English, came to her for advice. Over the next two years, Ho guided her mother through various appointments, translating doctors' instructions.
For the genital ulcers, Ho recommended Le try a soothing bath. When that didn't work, Le went to a gynecologist in California, who diagnosed her with a herpes infection and prescribed an anti-viral drug called acyclovir, which successfully treated her ulcers.
But that treatment didn't work for long. A few months later, the genital ulcers returned, even though Le was still taking acyclovir, Ho said.
Next, Le was referred to a dermatologist, Boodman writes.
A few months later, a new symptom appeared: Le's right elbow swelled suddenly and became painful. Le visited a rheumatologist, who diagnosed her with rheumatoid arthritis.
Several weeks later, the swelling disappeared, but with its disappearance came the return of the genital ulcers.
Six months later, Le woke up with a swollen left ankle. "It looked like it was broken," Ho said. The ankle was also hot to the touch, which suggested there may be inflammation or an infection, Boodman writes.
Le visited her primary care doctor, Huyanh Ton, who found elevated levels of erythrocyte sedimentation rate and C-reactive protein, both of which were higher than those seen in people with rheumatoid arthritis. That meant a trip to yet another doctor, this time a hematologist.
By this point, Le had yet another new symptom: Oral ulcers on her tongue and in her mouth.
"Once one symptom went away, another would appear," Le said in a statement dictated to her daughter. "My mouth ulcers had gotten so large I could only eat soup because I was in so much pain."
Ho said her mother "was kind of freaking out. She kept asking, 'Do I have cancer?'"
An unlikely breakthrough
But in September 2017, Ho was sitting in a presentation about working with sexually traumatized children and adolescents when a particular case and picture caught her attention.
The instructor was telling the story of a teenage patient who had been given an incorrect diagnosis by a doctor in training. The girl had skin ulcers that were discovered not to be from herpes, but from a rare disease called Behcet's syndrome or Behcet's disease.
This condition causes inflammation in different parts of the body, which can lead to ulcers that come and go. Among the most common symptoms are oral and genital sores, and if untreated, the disease can cause blindness, stroke, or potentially death.
After seeing a picture of the ulcers in the presentation, Ho said she thought, "Whoa, that looks a lot like my mom." She jotted down the name of the disease in her phone.
A few weeks later, Le developed a quarter-sized boil on her calf, and her genital and oral ulcers returned.
Ho persuaded Le to see a new dermatologist, but Le's sores disappeared by the time of the appointment.
When the sores returned, a few months later, Le and Ho went to see Huyanh Ton, Le's primary care provider. Ho told the doctor she thought her mother had Behcet's.
Ton wasn't fully convinced in part because the disease is so rare, affecting about 16,000 people in the United States. There's no test for Behcet's, but diagnosis is based on the presence of a series of hallmark symptoms, including eye pain or uveitis, which Le did not have.
Months later, Le had another flare-up and returned to Ton, who was beginning to think Behcet's was more likely. However, he said the diagnosis would need to come from a rheumatologist.
Then, in May 2018, Le saw a rheumatologist who finally diagnosed her with Behcet's. The doctor altered her medication regimen, and since then, Le's health has improved and her symptoms haven't returned, Ho said.
Le said she's "so thankful that my daughter is a nurse and was able to attend class at the hospital that day." Without it, Le said, "I am not sure if I would have a diagnosis right now."
Ho added that her mother's case made her more sensitive to some of the difficulties patients can face. "It made me put myself in the place of a family who is non-English speaking," she said. "Even with translators, it's difficult" (Boodman, Washington Post, 4/20).
Next: Address the needs of your rising-risk patients
Each year, about 18% of rising-risk patients escalate into the high-risk category when not managed. By investing in rising-risk patient management, organizations can significantly slow the churn of rising-risk patients into the high-risk patient cohort and avoid associated future costs.
This research briefing covers the case for rising-risk management and includes four high-level steps to develop a sustainable strategy.
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