Friday, 19 September 2025

Finding Community—and Herself—Through a Psoriasis Diagnosis

From healthcentral.com

Student and advocate Alina Vue shares the challenges and triumphs of living with generalised pustular psoriasis and psoriatic arthritis 

Between early morning classes and late night study sessions, no one ever said college was easy. But for Alina Vue, a 25-year-old student based in Westminster, CO, it’s been especially tough juggling classes and not one, but two forms of psoriasis. “This is my second attempt at college; I was in my second year before I took my hiatus,” shares Vue, who is currently studying communications at Front Range Community College.

Vue was just two years old when her mother first noticed splotchy rashes on her skin. “At first, they thought it was just baby eczema. That’s pretty common with the kids in my family,” says Vue, who is Hmong American. So her parents did as most would: moisturized her skin well and sought to reduce irritation via home remedies.

“But it kept getting worse,” Vue explains. One day, her skin not only turned really red, but felt very hot to the touch. Worried this was far beyond eczema, her mother rushed Vue to the local emergency room in Green Bay, WI. There, a doctor quickly recognized the symptoms of generalized pustular psoriasis (GPP), which include inflamed skin, fever, fatigue, nausea, weight loss, itching, muscle weakness, headaches, and the tell-tale painful pus-filled white and yellow bumps.

“I vividly remember being very itchy,” Vue says. “I’m glad that I was diagnosed, because it is a pretty severe experience. My mom was my champion. She was clear that something was wrong.”

While the National Psoriasis Foundation estimates that 2% to 3% of the population has one of the five types of psoriasis, only about 1%of those cases are GPP. The low prevalence is one of the reasons Vue likes to share her story. “People tend to think psoriasis is just a skin thing, and it definitely relates to the skin, but it’s an autoimmune disease, so it’s definitely more than what they think it is. It’s inflammatory, so it can lead to organ issues, I’ve had swollen feet, I’ve lost a lot of weight unexpectedly. It’s an all-around intense health issue separate from the skin itself,” Vue says.

Finding the Pattern

By the time Vue was old enough to start kindergarten, her health was locked into a pattern: a massive flare each winter, followed by recovery each summer. “I would have this dual experience throughout the year of like, ‘Ah, everything’s fine!’ and then come my birthday in September, things would start getting worse again. I have a lot of memories of not being able to do recess because I lived in a very cold climate. I did a lot of activities in bed because it was very hard to move around,” Vue says.

By the time Vue reached third grade, her condition had gotten more severe, leading her mother to homeschool her for a year. “That was one of the worst bouts of my psoriasis because it was just so hyper-aggressive. It was a tumultuous time and I was very sedentary,” remembers Vue.

She filled her days drawing and writing poetry with a cousin. She credits her father with the inspiration to put pen to paper. “My father is a pastor, and he used to write sermons all the time, so words were a big part of my childhood. But I also didn’t know how to tell people things, and writing was a more accessible tool for me to express myself,” says Vue.

These days, she’s tapping that tool for school. The severity of her conditions has meant that she hasn’t yet been able to work a job, but she’s excited to put her talent to good use after graduation. “I love film and design, and I would love to be in the film industry as a graphic designer or social media marketer, or even in spaces where I can talk about movies and fashion and art,” she says.

Adding a Diagnosis

Vue returned to school for fourth grade, but not before being thrown for another loop. In late 2009, when she was nine, she noticed a new pain. “I was struggling with swollen ankles,” she says. But her inflamed joints didn’t seem like a big deal until she was hospitalized for two weeks for her pustular psoriasis. “I was very sick. I remember being in the hospital and in the midst of it all, doctors recognized that I also had the presentation of psoriatic arthritis,” she says.

Psoriatic arthritis is an autoimmune condition in which the immune system doesn’t just attack the skin, but it goes after the joints, tendons, and ligaments, leaving pain, swelling, and stiffness in its wake. About one in every three people with psoriasis will develop this painful condition (2.4 million people in the United States alone), though it is usually diagnosed between the ages of 35 and 55. Studies estimate that about 15% people with this condition have not yet been diagnosed.

If left untreated, psoriatic arthritis can cause permanent joint damage. That’s definitely a concern for Vue, who says the condition has always felt undertreated, with doctors mostly relying on the medications for her GPP to treat both. “I'm trying to see a rheumatologist right now,” she shares.

Experimenting With Treatments

Middle school is tough for everyone, but it hit Vue especially hard. At the start of sixth grade, she experienced a flare so bad it put her back in homeschool.

Alina Vue
Courtesy of Alina Vue

“I had a very hard time walking because the pain was aggressive. So I was sitting all the time, mostly at a table doing my homework. But after a month or so, the skin behind my knees started closing up, and then my legs started atrophying,” Vue shares. Unable to straighten her legs or walk on them, she was hospitalized again, and it took two months of physical therapy to get her back on her feet. “It was a very trying time.”

It was also a time of experimentation. Like most chronic illnesses, psoriasis can be treated with many types of medications. And like most chronic illnesses, it can be tough to land on the right, unique combination that will facilitate a person’s best life.

Vue is no exception. She’s been on several topical medications, most notably triamcinolone, a corticosteroid that she used for four years and discontinued because it thinned her skin and sensitized it. She’s taken oral systemic medications, including immunosuppressants cyclosporine (“tasted horrible and didn’t change anything”) and methotrexate (“actually made me more itchy”), with little success. She also tried UV light therapy, but that just “made me feel like a cupcake in a display case.”

It wasn’t until 2010 that Vue’s doctors introduced biologics, which are injected or IV-infused medications that target relevant portions of the immune system, rather than smothering the entire thing. She started with Humira (adalimumab), an injectable that worked for a year before abruptly stopping. Then she moved to IV infusion Remicade (infliximab)for a year until it triggered anaphylaxis, her body developing antibodies against the medication and her throat closing up.

Seeing her child gasp for air brought Vue’s mom to a breaking point. Vue moved to virtual school (where she stayed through graduation), and they took two years off medications, trying ultimately unsuccessful home remedies, including some from their Hmong culture like eating eucalyptus leaves for their anti-inflammatory properties.

Testing Genetics

By age 16, Vue was ready to try medications again, starting with injections of Stelara (ustekinumab), which blocks the IL-12 and IL-23 proteins in the immune system. Again, it worked for a year before failing, throwing 17-year-old Vue into yet another flare.

Lucky for Vue, her doctor had a new plan. “She asked if we’d be okay with doing genetic testing to see if there’s a specific mutation causing my psoriasis, because there are certain medications that specifically target that, which would make it easier for recovery,” Vue says. “I said, ‘Yes!’ and they found my specific mutation and the right medication for me.”

It turned out, Vue has a mutation of the IL36RN gene, which makes a protein called interleukin 36 receptor antagonist (IL-36Ra). Researchers have linked this mutation (along with more than a dozen others) to GPP, as it reduces the amount of the protein in the skin of people like Vue, clearing the way for uncontrolled inflammation.

That led them to try Taltz (ixekizumab), a biologic that works by blocking interleukin-17A (IL-17A), another inflammation-causing protein linked to GPP. While Taltz is marketed as a medication for psoriatic arthritis and the more common plaque psoriasis, researchers have found that it can successfully treat GPP, too.

More than that, the autoinjector works for Vue, effectively putting her GPP into remission for seven years. “It really worked well, but my mom and I were wary, because so many things stopped working at the one-year mark,” she says. “But then it kept going, and I haven’t experienced a lot of major side effects. It’s the longest I’ve ever gone without a flare. Sometimes I’m still surprised, but I’m so glad.”

Still, Taltz, plus a skincare regimen of vitamin D topical cream and CeraVe, is not perfect. It hasn’t helped with her psoriatic arthritis as hoped, and as an immunosuppressant, it can open users up to infection. Vue got a taste of that in 2024, when a combination of summer heat and an infection she caught during an unmasked Mother’s Day photo shoot triggered her first GPP flare since starting Taltz. That touched off a new pattern; it flared again summer of 2025.

Sharing Her World

Alina Vue
Courtesy of Alina Vue


While she’s in a good place now, Vue doesn’t shy away from sharing the highs and the lows of living with psoriasis. She was diagnosed with major depressive disorder in 2024, but notes that the online psoriasis community has been pivotal to finding her footing.

“Psoriasis has significantly affected my mental health. Even though I grew up with very supportive people, it still felt like I was always in a bubble and separate from everyone,” she shares. “But seeing other people in the community talking about it and knowing that I wasn’t the only one with these intense feelings made me feel like I could carry less weight. Hearing them say, ‘This is who I am, and it’s okay,’ made me feel more confident and safer in the world.”

Ultimately, her experience with psoriasis has taught her some important lessons beyond what she could pick up in a classroom. “It’s difficult, but it’s also a beautiful opportunity to understand ourselves and each other,” she shares. “I have learned so much about my own humanity. There is so much beauty to be had from just witnessing other people’s journeys and being witnessed back.”

https://www.healthcentral.com/condition/psoriasis/finding-community-and-herself-through-psoriasis-diagnosis

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