About Joni

Joni Kazantzis, psoriasis and psoriatic arthritis patient advocate, smiling at a podcast microphone

Joni Kazantzis is a psoriasis and psoriatic arthritis patient advocate and writer who has lived with psoriatic disease since 1998. She started Just A Girl With Spots in 2012 to share what daily life with psoriasis actually looks like, and today she partners with pharmaceutical companies, nonprofits, and media as a patient voice, speaker, and advisor.

My story

I was 15 and a sophomore in high school when I woke up one morning in April 1998 covered in spots, and even though my grandma had psoriasis, I was sure it was an allergic reaction. It was plaque and guttate psoriasis, and over the next few years I worked my way through creams, foams, shampoos, and plastic wrap to hold it all in place, then light therapy three times a week, all before I was old enough to drive. Being a teenager with spots that nobody understood made me feel secluded and incredibly self-conscious, and I spent a lot of energy hiding them.

My skin has a mind of its own and it still keeps me guessing. I can go long stretches with clear skin, then wake up to a brand new flare that showed up overnight and settles in for just as long. At 38 I was also diagnosed with psoriatic arthritis, which added joint pain and fatigue to the mix and was one more reminder that this has never been “just a skin condition.” I’ve tried topicals, light therapy, and biologics, with some real wins and some real misses, and I’ve learned that taking care of my body and mind every day matters just as much as any prescription.

Why I share

There was nothing online to tell me what to expect when I was diagnosed, so I started this blog to be the resource I wish I’d had. Psoriasis isn’t only about how it looks, there are mental and physical challenges that come with it every single day, and I want anyone who lands here to know they aren’t alone and to leave with at least one thing they can try tonight. I refuse to let psoriasis define who I am, and if anything it has taught me to pay closer attention to what my body and mind need and to push harder, not less.

Since then I’ve written more than 90 articles for Healthline, PlaquePsoriasis.com, HealthCentral, and others, spent four years as the Community Guide for Bezzy Psoriasis, and shared my story with Elle, Women’s Health, and Everyday Health. You can find all of it on my As Seen In page.

Working together

I’ve partnered with pharma brand teams since 2012 on advisory boards, patient councils, and campaigns, and I work with nonprofits and media who want the patient perspective built in from the very beginning instead of added at the end. My other career, more than twenty years in marketing and brand strategy, means I understand briefs, timelines, and review processes, so I can help get the patient voice right without slowing anyone down. If that sounds like what you need, take a look at Work With Me.

Quick facts

  • Diagnosed with plaque and guttate psoriasis in 1998, at age 15
  • Diagnosed with psoriatic arthritis at 38
  • Founder of Just A Girl With Spots (2012), named one of Healthline’s Best Psoriasis Blogs
  • Community Guide for Bezzy Psoriasis, 2021 to 2025
  • More than 90 published articles on psoriasis and psoriatic arthritis
  • Speaker at the American Academy of Dermatology conference

A quick note before you try anything

We’re all different, and something that works for my skin may not be the right fit for yours. I’m not a doctor, nurse, or nutritionist, so please talk with your health care provider before starting or changing any treatment.

Questions, feedback, or just want to say hi? Email me at justagirlwithspots@gmail.com, I read every one.

22 comments

  1. Thanks for following me on twitter. I wish you all the best with your blog. I’d be the first financial sponsor if you are planning to put together a project to help people with psoriasis okay? VPF is my pet project. Unfortunately, I can only put in an hour every month to work on it. It’s difficult to fly solo.

    S.

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    1. Thanks vanpf888, always great to connect with people who have similar goals! I’m currently focused on the blog, but once I have room to grow into a larger project I’ll definitely keep you in mind. Thanks again for your support 🙂

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  2. Hey, thanks for following me, you have a great blog – I think we have similar goals, and I hope we can work together at some point 🙂 I’d love to do a profile on you for my blog for starters! Would you be up for that?

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    1. Thanks so much for reading & taking the time to comment. I’m looking forward to your comments and any feedback on topics you’d like to read about! Good luck with the raw food/vegan lifestyle, I’d love to hear your progress!

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    2. Hi, I have had psoriasis since I was 14 so that would be 26 years. I believe it is in the food as well. I read some where when studying natural medicine that citrus is a reactor to psoriasis. So I gave up all citrus. No more oranges or lemons or limes, even gave up pineapple. I no longer have break outs now. It took my body 6-8 months to become completely clear but I have been psoriasis clear for 3 years now. I occasionally get one or two spots here and there but no patches ever again. I have also read that wheat is a big cause for psoriasis of the scalp. So I am gluten and wheat free as well. A food allergy could be the cause and citrus has been proven to be the biggest food allergy for psoriasis.

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  4. Glad to see someone else sharing the news that psoriasis is not just a dermatological disorder, lesions being just a topical physical manifestation of an immune system gone haywire. After 11 years struggling with this disease, my psoriatic arthritis is getting progressively worse every year and there’s little that can be done about it.

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    1. Hi Rodger, thanks for reading and taking a moment to comment. Totally agree with you – there’s something inside our bodies causing the physical reaction and I want to spread the love that we’re not alone in dealing with this condition. I hope you can find something soon to ease your pain, it’s not easy getting through the days when you’re hurting. Best of luck to you.

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    2. I have been using Enbrel shots once a week for my Psoriatic Arthritis for awhile now and it really helps .And Enbrel helps pay for some that my insurance doesn’t. Good Luck with your struggles.

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      1. I’m so glad that the Enbrel is working and they’re helping with the cost. It’s always such a win when you finally find something that helps. Best wishes to you!

  6. My name is Lizzy, I’m 21. I had perfectly clear skin up until almost two years ago. Though I’ve always had joint problems.. It took all sorts of doctors an entire year to realize it was, in fact, psoriasis. At that point, it had covered 90% of my body and I couldn’t get it under control. Every time I would move or even breath my skin would tear and bleed. I’ve never known anyone with psoriasis so trial and error was my only method and my doctors knew almost nothing about how to help me. All they said was I was the most severe case they’d ever seen, including in books. They even took pictures. I had to quit my job because I could no longer perform simple tasks required to get my job done. I wouldn’t go out for the longest time, my entire face was one big red spot. No clear skin to be seen. The only thing that hurt worse than smiling was crying. I’d get so frustrated but I had to try not to cry. The salty tears burned so bad. I felt so helpless. It got to the point I could barely get out of my bed and when I did there was so much blood and dead skin on my sheets that I had to change them. I have multiple forms of psoriasis, the newest of which being psoriatic arthritis so bad I can barely move my fingers or get out of a chair. I’m now on enbrel and methotrexate but I still currently am having a really hard time with a terrible breakout on my chest and the arthritis and have been feeling so out of place and uncomfortable that at times death almost seems welcoming. Though don’t get me wrong. I’d never want to kill myself. I just feel like giving up. Some days I wonder how I’ve even managed thus far. It’s so relieving to find a blog that I can relate to and to know there are other people out there going through similar things. From what I’ve read, you seem to know your stuff and I was wondering if we could keep in touch, there’s so much I don’t know about this disease and I think it’s staying bad because of it…

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  7. Hi Joni,

    It is nice to come across your blog and see a young beautiful lady behind it. It is hard being younger and trying to keep up with style and self confidence when you are battling spot all over your body. Your awesome!!! I would like to add I have read some of the things from your other readers and seen that a lot of ppl have started breaking out with PS when they were young- it’s crazy to think that I just went to my dermatologist because my 6 yr old had spots all over his stomach and back- I am still pretty sure that it is PS. The dr and his MA wanted to tell me that it is too rare to see PS in ppl under 30….WHHHATTTTT???!!! I am so outraged at this. This is not rare, it runs in the family and I even started to have PS when I was 11 years old and I am not even 30!!!! Do we know more than the derms????!!!!
    But anyways thanks again for your blog and letting me know that I have a spots like a leopard lol 🙂

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    1. Hi Francesca, Thanks so much for your thoughtful comment. I truly appreciate it! I can’t believe that a derm nowadays would believe it’s still rare to see someone under 30 with psoriasis. A large majority of the people I talk to were diagnosed as a child or in their teens. Definitely time for a new doctor! Go with your gut, it sounds like you do know more him. Thanks again for stopping by and let me know if there is anything in particular you’d like to read more about. Best, Joni

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  8. Hello Joni,

    Thanks for following me on twitter…Like you I want to something to help others with our condition. That is why I started a FB page dedicated to Psoriasis and PSA Patients. It’s callled “Psoriasis Campaign for a Cure” I would love to share your blog on there if you don’t mind. You have a wonderful smile and a get approach to your disease. I love it! Keep up the good work. Thank you…

    Todd Bello

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  9. Hi Joni!

    I have been following your blog for a while now and appreciate your not being afraid to speak out about this disease. Many people shy away from addressing it publicly; I know I personally have had trouble coming to terms with psoriasis and the social consequences and baggage it comes with.

    In order to overcome my hesitations, I started a blog which talks about natural, healthy and holistic treatments for psoriasis, such as diet, exercise and even meditation. I would love to do a guest post on your blog sharing some of the knowledge I have gained from 10 years of grappling with the disease. let me know if you’d be interested!

    Cheers!

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  10. I’m Inspired by you joni. I know how it feels having psoriasis in your life. I too, have this condition since I was 16. bullying only made it worst, but I never gave up. I too want to share what I learn and your blog also provided me a lot of information to help me with my psoriasis. I now live a happier life with changing my diet with natural, organic foods as well as a whole new natural superfood. If you want to know about please email me and I can tell you all about it.

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    1. Today , my doc told me that I have PS. Not sure how to take it in. How to move forward. Need people to discuss and guide me through. It’s just day 1 panic .

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  11. As someone who has lived with this since I was 5 or 6. This was very refreshing holds a place in me. Good to see you take it and own who you are:)

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