Raising Awareness of GPP: Jimmy’s Story

In honor of Generalized Pustular Psoriasis (GPP) Awareness Day, coming up on Aug. 13, this NORD guest blog from the National Psoriasis Foundation details one man’s story to find a path forward.

July 28, 2025

Jimmy Castillo thought his toughest times happened when he was 15 years old. He was diagnosed with plaque psoriasis, and the visible nature of the disease immediately took its toll. He wore long sleeves or found creative ways to cover his skin, no matter how uncomfortable that might have been.

Castillo describes himself as an outgoing person, and with effective treatments, he was able to get past the isolation and back out into the world. One couldn’t blame Castillo for thinking the worst of it might be over.

About five years ago, at the height of the COVID-19 pandemic, psoriatic disease dealt Castillo another unexpected and incredibly painful blow. It was more than a sucker punch. It blew his world apart.  “I noticed something different,” he explains. “It was different than what I was used to as a teenager. I struggled with my dermatologist because he kept putting me on steroid creams and treating it like it was [plaque] psoriasis.”

Though Castillo didn’t know it yet, he had developed generalized pustular psoriasis (GPP), an incredibly painful and very rare form of psoriasis. Like all forms of psoriasis, GPP is not contagious, but unlike the more common types of psoriasis, like plaque or inverse, GPP was, and still is, unknown or unrecognized even by skilled and experienced dermatologists.

“I went to my dermatologist and told them I had this rash,” Castillo says. He explained that he could see that it was different from his plaque psoriasis, but his dermatologist didn’t recognize the trademark pustules associated with the presentation of GPP on the skin. “They told me it was part of my psoriasis. It felt different, and I really struggled.”

That’s when Castillo began his slow regression back to covering his skin and seeking isolation. “It brought back those difficult days when I had plaque psoriasis all over my body,” he says. “It created a social barrier for me. I was in a relationship and GPP affected that relationship. It was really awkward.”

The pain of GPP can be debilitatingly severe. For Castillo, the visible aspects also made everyday life nearly impossible. “It was in very noticeable areas, so it created – for me, I call it the dark days,” he explains. “Having it on my hands and using my hands to pay or to eat – everybody noticed. I became very shy, and I didn’t want to go out. When I did go out, I used to wear gloves with fingertips cut out.”

It Felt Different

Through all the uncertainty as Castillo searched for a diagnosis, he couldn’t shake the feeling that this was not plaque psoriasis. “The pain was different,” he says. “The feeling was different.”

Castillo could easily describe the difference, but that didn’t help him get to an accurate diagnosis. “It was more like a rash. It was mostly pustular, little circles with a white tip on them,” he shares. “It felt pointy and dry versus scaly and dry. It was more painful. I tried to get the puss out and that was incredibly uncomfortable.”

In a merciful twist of fate, Castillo found a dermatologist who conducted what he describes as a skin test, and that person was able to make the rare diagnosis of GPP. With the right diagnosis finally in place, Castillo and his health care provider found an effective systemic treatment that keeps the worst of GPP at bay. “When I finally got on a biologic, it helped a lot,” Castillo says. “With the relief of the medicine, I’m able to live a normal life.”

Like psoriasis, GPP is chronic. Though in some cases it can appear and then not reappear again, in Castillo’s case, GPP still shows up. Luckily, his treatment keeps things manageable. “I do have occasions during the winter when GPP comes back or when plaque psoriasis comes back, but I’m more aware now of how to treat it. When I do get a flare-up, I know how to control it better and move forward.”

Raising GPP Awareness

Tragically, stories like Jimmy Castillo’s are not uncommon. Even though GPP is rare, it affects people in profoundly negative ways. And as with Castillo’s case, even trusted dermatologists can miss this form of psoriasis. On August 13, the National Psoriasis Foundation (NPF) will recognize GPP Awareness Day. This is the first in what will be an annual reminder to others that GPP is painful and isolating, and that people with GPP need support. It’s also a call to health care providers to learn more about identifying and treating GPP, so that difficult journeys like Castillo’s are less common.

To learn more about GPP as well as how you can participate in GPP Awareness Day, please visit the National Psoriasis Foundation’s GPP resource hub.

Jimmy shared his story during NORD’s Rare Disease Day Community Conversation webinar. Click here to view a recording of that event.