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[Kate] When I wake up and I think I'm having a flare up,

my stomach just drops right out.

It's like this feeling of impending doom.

You almost go through the stages of grief.

It's like, oh, what happens now? Do I have to miss work? How much work?

My name is Kate and I'm autistic.

I'm disabled and I have generalized pustular psoriasis.

[Generalized pustular psoriasis (GPP) is a rare, lifelong disease.]

[GPP flares can happen repeatedly and come on very suddenly.]

So it starts for me like redness and then it gets,

it feels like your skin is so sensitive that anything to touch it hurts.

So it hurts to wear clothing.

And when I was in the hospital, I just had –

it was all up my arms all the way to my hands.

And it was my face, my scalp,

it was like the worst itch of my entire life.

But if I scratched it, it was like agony. 

It was like if you itched something 

and then realized you’re itching a wound.

It's always tiring being disabled.

There's no getting around that.

I'm tired a lot, and,

just the amount of things I have to worry about in my day 

that people kind of take for granted as they move through the world. 

It's a reality for a lot of us. 

There's a lot of us who are disabled and it's, it's not something 

you ever get the-- you ever get to stop thinking about.

The world makes me really sad sometimes 

and the only thing that helps is helping other people. 

That's why I love working with kids, 

because I can tell them, “You are great and wonderful, whoever you are.”

I'm a librarian and I have been for a long time.

We get to do the helping, which always makes me happy. 

I run a website for kids in my spare time

and I just get to do really beautiful things. 

You know, when you're disabled 

you don't have the luxury of being medium at your job. 

One of my friends calls it the disability tax, 

the extra effort that goes into everything. 

And I think that employers have this feeling that,

that takes away from the work we're able to offer. 

But no, we work so hard.

You know, I’m very optimistic now. 

I have to be optimistic. 

Because I've really been able to calibrate my life around 
my needs in a new way.

I have, you know, I have money because I need it to live.

But I mean, my job is also my passion and I'm really lucky there.

I have-- my life is full. It's, it's a beautiful life.

[Living with GPP is a tough job.] 
[Learn more at GPPandMe.ca]

[GPP Patient Video]
[This video represents the personal experience of a person living with GPP] 
[GPP=generalized pustular psoriasis.]
[PC-CA-105508]

[Diagnosis and journey]
[Carlie] I was diagnosed in 2011, and it was a long, scary thing.

I went to a dermatologist to complain about my skin, and I told him that

I had psoriasis and he said, “No, you do not.”

So I went

back to my rheumatologist because I was in pain quite a bit and didn’t know why.

And he really didn’t know why until I saw a new doctor.

It’s like a lightbulb went off in his head, and he said, “Oh my goodness,

I think I know what’s wrong. I think you have GPP.”

I feel that there’s a lot of need

for dermatologists to understand that there’s more than one kind of psoriasis

besides plaque psoriasis, so that we can get the help that we need.

[Flares and between flares]
I have flares about it seems like every few months. Right now, I’ve been in a flare

for like the last 6 months because I’ve been under a lot of stress.

The flares affect my daily life

in every way. They affect me emotionally, mentally, physically.

It affects the people surrounding me 

in every way possible. I have to figure out what to wear, because I often bleed.

The material sticks to my skin.

I’m embarrassed by the scars on my arms

so I tend to not want to get in relationships.

The flares affect me with my fatigue — I’m tired all the time,

so often I have to cancel out on plans.

People don’t understand that suddenly I don’t feel good.

I might have fever, I have to go to the hospital.

It’s a lot on a daily basis to handle, mentally and physically.

[Living with GPP]
The tips that I would recommend to people to help manage their GPP would be number one, 

to get lots of rest. Recognize your symptoms. That if you’re itching and burning

and you get blisters that are pus-filled, go to the doctor. Don’t wait.

I would say try not to be hard on yourself.

That’s the biggest advice that I can give.

[To learn more visit GPPandMe.ca]

[Boehringer Ingelheim]
[Reviewed by PAAB]
[© 2025 Boehringer Ingelheim (Canada) Ltd. All rights reserved.]