Life With a Rare Condition: Living With Generalized Pustular Psoriasis

Medically Reviewed by Neha Pathak, MD on March 19, 2026
5 min read

By Alyssa Zuercher, as told to Jodi Helmer

I wasn’t concerned about the bumps that appeared on my hands in 2023. I thought the small clusters of whiteheads were strange but not alarming and assumed they would disappear as quickly as they appeared. But the bumps didn’t fade. Instead, they multiplied.

 Clusters started appearing across my back. Each quarter-sized patch contained dozens of tiny pustules. Within weeks, the clusters were spreading across my body. When they started multiplying on my back, I thought, “OK, something is going on.”

 The symptoms marked the beginning of my frightening journey toward a diagnosis of generalized pustular psoriasis (GPP), a rare and severe inflammatory skin disease.

 

 

 

I made an appointment with my primary care provider, who thought the small clusters of pustules might be a form of shingles and prescribed steroids and a topical ointment. The medications helped a little, but as soon as I stopped taking them, the pustules returned. They soon spread from my hands and back to my legs, feet, and scalp. 

In my search for answers, I scheduled consults with a gastroenterologist and rheumatologist to see if the pustules might be related to my diagnoses of ulcerative colitis or rheumatoid arthritis. My gastroenterologist suspected the biologic medication I was taking to control my ulcerative colitis might have triggered the initial flare. This whole time, my skin was dry, cracking, and oozing. I was trying every ointment I could get my hands on.

After three months of medical appointments and no answers, a dermatologist took biopsies. I was diagnosed with GPP. Although the wait felt endless, I was lucky: The average patient with generalized pustular psoriasis sees at least four different doctors and waits 2.4 years to get a diagnosis.

By the time I was diagnosed with GPP, the disease had already taken a devastating toll. The pain was overwhelming and constant. My skin felt like it was ripping apart cell by cell anytime I moved.

I was in survival mode. Eating was so hard that I relied on protein drinks and crackers for calories. I needed pain medications to sleep and spent most of my time in bed. I’m a crochet artist, and I struggled to work because the pustules caused too much pain to use my hands.

Basic tasks became ordeals. Showering required careful preparation, including pain medication before stepping under the water. Even then, the process of washing away dead skin and treating the sores was excruciating.

The disease also attacked my scalp. The buildup of skin and sores became so severe that I eventually shaved my head, hoping it might make treatment easier. Instead, it revealed just how extensive the damage had become. My entire scalp had hardened into a single scab-like layer. It felt like my skin was moving and crawling. The sensation was like lying in a bed of ants.

The physical pain was only one part of the experience. Living with a rare and painful disease also took an emotional toll.

Even though GPP isn’t contagious, others could see it. I knew the appearance of pustules could be alarming. I started wearing long sleeves, scarves, and other clothing that covered my skin but that caused different issues because the pustules could burst open with friction from clothing and movement. It meant that I often had painful sores and flakes of skin that felt like grains of sand stuck to my skin.

At night, I developed a routine to keep skin cells contained. I slept tucked inside a folded sheet. Each morning I shook it out and swept up the pile of skin that had fallen off overnight.

Although I had faced numerous serious health challenges from rheumatoid arthritis and kidney infections to gallbladder attacks and multiple surgeries, living with GPP was unlike anything I had faced before. Mentally, I felt like I was watching my body decompose … like the pieces were just falling and oozing and there wasn’t a whole lot I could do. It was the most painful thing I've experienced.

 

 

Accessing treatment was really hard. There were several complications with my insurance, so it took more than a month to receive the medication that my doctor prescribed. While I was waiting, my symptoms got worse. We figured out that one of the medications I was taking triggered a flare, so I had to stop taking it, and that meant that my other autoimmune diseases were temporarily uncontrolled. Doctors worried that I might need to be hospitalized.

Eventually, the new immunosuppressant medication arrived and the treatment significantly reduced the flare and helped get my symptoms under control. While it hasn’t eliminated the disease, it has made life manageable again.

I still experience flares several times a year. They typically last between three and six weeks, and even smaller outbreaks can be exhausting.

I live in constant fear of the next flare. I can feel when a flare is coming. There’s a feeling I think of as a warning sensation. It’s like a burning feeling under my skin that signals something is about to erupt. It makes me question everything: What caused it? Was it something I ate? A medication change? Stress? The unpredictability of GPP can be as difficult as the symptoms themselves.

I try to focus on the present and not the uncertainty. I’m in some online GPP support groups that help, and I share my story when I can, hoping it might help someone else recognize the disease or simply feel less alone in their diagnosis.

I want other people not to lose hope. Sometimes when you're trying to get a diagnosis, you start to question your own symptoms and think, “Maybe it's not that bad. Maybe I'm exaggerating it.” One of the things I say to other people with GPP is that just because the medical community can't put a name to it right away doesn't mean there's nothing wrong and to keep speaking up.