“My entire body itched so badly that I had to scratch until blood flowed freely just to find temporary relief. When I woke up in the morning, my bed was soaked in blood and pus. That was my daily routine."

The voice of Ms. Kim Soo-jin (alias), 26, was calm, but the despair permeating it was not easily erased. “Prurigo nodularis (PN),” a disease still unfamiliar in Korea, had completely upended her life.

Having never suffered from even acne, let alone other skin problems, Kim first experienced the agony of unexplained, intense itching and nodules erupting all over her skin around the age of 20. However, she endured a long “diagnostic odyssey” before receiving a proper diagnosis.

The ‘wanderings’ before diagnosis, and the pain that made her want to tear her skin off

When the symptoms first appeared, Kim visited a neighborhood dermatologist. Her condition was dismissed as simple dermatitis, and she was treated with antifungal medication and steroid ointment. However, there was no improvement. Instead, the symptoms worsened, with nodules erupting on each finger joint, making even everyday hand use uncomfortable.

Over the next year, she visited numerous dermatologists, but “there was nowhere to trust or rely on.” Kim finally went to a university hospital. Only then was she diagnosed with atopic dermatitis and could begin treatment. However, the diagnosis still wasn't the “right answer.” It was only years after the symptoms appeared that she received the precise diagnosis of “prurigo nodularis (PN)” from her primary doctor.

“At first, they just said it was simple dermatitis. In the meantime, my life fell apart. I was too ashamed to show my skin, so I only wore long sleeves. Every night, I cried while picking at my skin,” she said during a recent interview with Korea Biomedical Review.

Biologic treatments gave her life back, but…

Ms. Kim's treatment journey was a series of trials and failures. Steroid ointments, oral steroids, light therapy, immunosuppressants... Yet the symptoms never fully subsided. She later took a JAK inhibitor for two years and experienced temporary improvement, but unfortunately, her immunity plummeted.

"During the time I was on the JAK inhibitor, I got Covid-19 twice and even the flu. Others said they got through it easily, but I was struggling to breathe. Even my company couldn't believe I got infected three times in a row within a month. The pain was so intense I thought dying would be better," Kim said.

The choice made afterward was the biologic “Dupixent” (dupilumab). As a targeted therapy, it has fewer systemic immunosuppression side effects, so Kim’s physical condition didn't deteriorate significantly as she had feared.

“I could eat freely, my fatigue decreased, and I could live a normal life,” she recalled, describing Dupixent as an experience that restored her “quality of life.” However, she encountered another difficulty: the cost.

Unbearable costs and repeated treatment interruptions

Dupixent is a non-reimbursed drug for PN under national health insurance. Ms. Kim received treatment for about a year, but the monthly cost equaled her rent. She attempted to adjust the dosing interval with her medical team, but sustained use remained impossible. She eventually switched to another biologic with a patient assistance program run by the pharmaceutical company, but even this had to be discontinued after just six months due to cost.

“For a 26-year-old just starting her career, spending millions of won on treatment is an unbearable reality. If I stop treatment, the nodules return, and then my life falls apart again,” Kim said.

Currently, her symptoms have worsened again, and she is considering restarting treatment. However, the barrier of financial burden still stands firmly in her way.

“The itching is beyond imagination”

The suffering experienced by patients with PN goes beyond that of a simple skin disease. “The itching is beyond imagination,” Kim said.

The extreme itching that strikes relentlessly at any time cannot be relieved by mere scratching. Kim explained that she had to “tear off” the nodules until the skin was raw and blood pooled before the itching would subside.

“Even when I slept with my whole body tied up, the bed was soaked in blood and pus by morning. I had to wear long sleeves even in summer, and even showering was painful,” she said.

The psychological aftermath is profound. Kim’s self-esteem crumbled, and she began to avoid social interactions. Faced with an illness even her family couldn't understand, she had to seek psychiatric treatment.

“People casually say, ‘Just don't scratch,’ but that's impossible. There's nowhere to talk about it, and no one understands. It felt like a war I fought alone,” she said.

Patients despairing in the system’s blind spot

PN remains a disease without an established treatment paradigm in Korea. Often misclassified as atopic dermatitis or other skin conditions from the initial diagnosis, patients frequently miss opportunities for appropriate treatment.

Some medical professionals even include patients with PN under the atopic dermatitis code. While it’s true that both conditions often coexist, atopic dermatitis has relatively more treatment options covered by insurance, and some patients may qualify for special billing exemptions based on the severity of their condition.

However, this practice is concerning as it distorts the actual status of PN patients and risks delaying proper recognition of the disease itself and the establishment of a treatment environment. Ultimately, patients face a “double burden” in diagnosis and treatment.

At the end of the interview, she appealed:

“I hope institutional support, like health insurance and special billing exemptions for PN treatments, is implemented as soon as possible. Only then can patients continue their treatment and carry on with their lives,” Kim said.

Prurigo nodularis falls into the realm of “lifelong management,” not a cure. For patients, it is not merely a nodule on the skin, but a name for suffering that gnaws away at their body, mind, social relationships, and even their finances.

“How long must I live like this?” This question from a young patient is not just the voice of an individual but the cry of countless patients left in the blind spots of the system.