Patient's perspective. Hand holding clear line on real white speech bubble paper cut.

“When my first outbreak happened, I missed nearly a month of work. Severe outbreaks are visible for weeks even when I’m healing, and people are grossed out by seemingly unhealthy skin”

Kate

“Mental health support is essential. Following my first outbreak, I went through the hardest time of my life: I was depressed, exhausted, and anxious”

Kate

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Generalized pustular psoriasis (GPP): a patient perspective

A rare, painful, and potentially life-threatening dermatological condition

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Kate

Bank Australia

Patient

DISTINCT FROM plaque psoriasis, generalized pustular psoriasis (GPP) is a rare dermatological condition characterized by the sudden appearance of multiple blisters filled with sterile pus overlaying painful red and scaly skin on large areas of the body, referred to as a flare. A flare can be triggered by many things, including, but not limited to, certain medications, steroid withdrawal, stress, excessive sun exposure, infections, and pregnancy. Flares greatly affect a person’s quality of life and can also sometimes present with systemic symptoms such as fever, chills, malaise, nausea, and pain. Other organs can be involved extracutaneously, and flares can escalate quickly to life-threatening complications, which may require emergency medical treatment.1,2,3 Given that it is so rare, associating this clinical presentation with GPP can be challenging and consequently lead to delays in diagnosis.4

One challenge is the unexpected nature of the condition – not knowing what the triggers could be. I have to be really careful to avoid skin irritation, and I never know with certainty which efforts are useful. I’m careful about anything that touches my skin, including things like laundry products (one of my breakouts was caused by fabric softener). Sun exposure is a big factor for me, as well, so I try and limit my time outdoors. I hate being afraid of sunshine.

no outbreaks in the past three years. But when her GPP flares up, it’s nuclear. “It starts in the centre of my body and goes outward. My first outbreak approximately five years ago put me in the hospital for three nights on IV fluids and antibiotics to make sure I didn’t reach a state of sepsis. It was intense, painful, and itchy, and I lost 70 percent of my skin. I’ve had a few outbreaks since then, but I do everything I can to avoid them because they level me.”

of ways, which means it’s almost impossible to find anyone with the same experience. There are support groups for plaque psoriasis, but my condition doesn’t have a lot in common with that. For me, outbreaks are rare – but when they happen, I can’t manage daily life. It’s only through extensive travel with patient advocacy work that I’ve met anyone who shares my condition. Unfortunately, that’s not a solution available to most people.

I strongly believe that the stigma around workers with disabilities is misguided. The chronically ill and people with disabilities I’ve spoken with are some of the hardest workers

I’ve ever met. Unfortunately, we waste a tremendous amount of energy pretending we’re not disabled, which takes a huge toll. For me to remain employed, I have to work harder and be at the top of my field. And this is applicable to others who have disabilities, too.

1 Bachelez H, et al. Trial of Spesolimab for generalized pustular psoriasis. NEJM. 2021;385:2431-40. 2 Crowley JJ, et al. A brief guide to pustular psoriasis for primary care providers. Postgrad Med. 2021;133(3):330-344. 3 Gooderham MJ, et al. (2019) An update on generalized pustular psoriasis. Expert Review of Clinical Immunology. 15(9):907-919, DOI: 10.1080/1744666X.2019.1648209. 4 Puig L, et al. Global consensus on the clinical course, treatment, and management of generalized pustular psoriasis (GPP). Presented at the European Academy of Dermatology and Venereology (EADV) Congress, Milan, Italy, 7–10 September 2022: P1203.B.

Generalized pustular psoriasis

Generalized pustular psoriasis (GPP) affects about 2.77 people per million; and it impacts people in a range of ways, which means it’s almost impossible to find anyone with the same experience.

Boehringer Ingelheim is working on breakthrough therapies that transform lives, today and for generations to come. As a leading research-driven biopharmaceutical company, the company creates value through innovation in areas of high unmet medical need. Founded in 1885 and family-owned ever since, Boehringer Ingelheim takes a long-term perspective. More than 52,000 employees serve over 130 markets in three business areas: human pharma, animal health, and biopharmaceutical contract manufacturing.

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Kate (she/they) is a dorky children’s librarian who somehow became a little bit internet famous. She’s best known to her over 45 thousand followers as the Lavender Librarian and is the founder and director of Storytime Solidarity. Kate was diagnosed with autism in 2020 after years of struggle. Diagnosis was rebirth. In the years since, Kate – like many who share her neurotype – has moved from surviving to thriving. In addition to her work in libraries, she is also a sought-after speaker, professional singer, and patient advocate. She travels internationally to share her story of living with multiple rare illnesses.

Bank Australia

Kate

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Fighting for

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Fernando Lemos

Bank Australia

Industry experts

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Bank Australia

Fernando Lemos

Beyond Bank

Darren McLeod

Heritage Bank

Stewart Saunders

MFAA head credit adviser, Finsure Finance and Insurance

Christopher Lee

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Fighting for the customer

The customer owned a bank saw a huge boost after the Hayne Royal Commission. One year on and their market share is growing as customer continue to see their value.

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Fernando Lemos

Bank Australia

Industry experts

Beyond Bank

Darren McLeod

Heritage Bank

Stewart Saunders

MFAA head credit adviser, Finsure Finance and Insurance

Christopher Lee

Bank Australia

Fernando Lemos

What do employers need to know about rare diseases like GPP?

Published February 10, 2025

There are many things you can do to support someone living with GPP. Reaching out often to ask how you can help is a good place to start.

Check in with them to help with feelings of isolation

Reassure them that it’s ok if they need to cancel or reschedule plans at the last minute

Encourage them to seek medical advice at the first sign of a flare

Offer to go to the pharmacy, help them set up prescription delivery, or give them a ride to the doctor

Ask them if there is anything else you can do to help in advance as many individuals may have “brain fog or executive dysfunction” when they are at their worst

Most importantly, let them know that you are there for them and they are not alone.

What are the challenges of living with GPP?

How does GPP affect you at work?

When my first outbreak happened, I missed nearly a month of work. When I came back, I brought fingerless gloves because I work with kids, and they would ask what was going on with my hands. Severe outbreaks are visible for weeks even when I’m healing, and people are grossed out by seemingly unhealthy skin. That said, I don’t mind the kids’ curiosity; having that type of dialogue can be a great empathy-building activity. We don’t have to be hush-hush and can explain what’s going on in an age-appropriate way.

It’s lonely having an illness almost no one else has. GPP affects about 2.77 people per million; and it impacts people in a range

What additional resources or support would you have liked access to?

Mental health support is essential. Following my first outbreak, I went through the hardest time of my life: I was depressed, exhausted, and anxious. Even now, living with GPP is like living with a bomb –and I don’t know what will cause it to detonate. This leads to constant vigilance, but I have to manage my stress because GPP flares can be triggered by anxiety. Right now, I credit my improved mental health to my continued remission.

People with disabilities don’t ask for more than they need from their employer. In fact, they tend to ask for less and settle for less than they need. We put in a tremendous of effort hiding our disabilities, trying to make them seem not as bad as they actually are. We feel that if we ask for something that’s in line with how bad our condition really is, the accommodation will be considered excessive. You won’t find employee loyalty anywhere like you will among workers with disabilities. That’s because when we find a workplace that’s willing to accommodate and support us, we’ll stay, be devoted, work as hard as we can, and call in sick only when we absolutely have to; we’re continuously proving how strong we are.

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Source: https://patient.boehringer-ingelheim.com/ca/gpp/living-with-gpp

Patient perspective Kate is a librarian and writer who lives with GPP. During a GPP flare, small pustules spread across large areas of the body; if left untreated, GPP flares can cause complications like sepsis and multi-system organ failure. Some patients have persistent disease aggravated by GPP flares, while others, like Kate, experience periods of remission. Kate is in an extended period of remission now, with

How can I support a friend or loved one with GPP?

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