Hidden Areas, Visible Impact: A Woman’s Struggle with Moderate to Severe Genital Psoriasis

When looking back on joyous moments throughout her life, Vickie Wilkerson imagines a calming day outside. From tight lining for catfish on the lake, to planting a flower bed in her backyard, being in nature puts her mind at ease.

But the great outdoors was not always so peaceful for Vickie. Over 20 years ago after spending time working outside, she discovered a scaly patch on her left leg, initially thought to be poison ivy. She experimented with various creams and over-the-counter products to no avail, and her symptoms continued to worsen. Eventually, she was diagnosed with moderate to severe plaque psoriasis. Plaque psoriasis is the most common form of psoriasis. It was a lonely and uncertain time of not knowing much about the disease, as it continued to spread across her body, even to areas such as her scalp and genitals.

Vickie is not alone—it's estimated that up to 80% of people with psoriasis will have a plaque on their scalp, and up to 63% of people with psoriasis will experience genital psoriasis during the course of their disease. "Sometimes, patients do not discuss these issues with their doctors for a variety of factors, including embarrassment, stigmatization, or shyness about the location," said Guy Eakin, Ph.D., Chief Scientific and Medical Officer, National Psoriasis Foundation. "While they may not be openly discussed, these manifestations of psoriasis are both common and manageable."

Vickie shares how her psoriasis has shaped her into who she is today and offers advice for others facing challenges in treating moderate to severe plaque psoriasis especially in areas that are more difficult to treat like the genital area.

Following your initial diagnosis, did you experience any obstacles in accessing care?

One of the most challenging aspects after my initial diagnosis was the lack of information. It was a long road to finding the right treatment—I saw many doctors, and I was prescribed treatments that didn't work for me. Even today, I experience difficulties with treatment as my symptoms aren't always visible to the human eye. However, I'm grateful that there are more options available today compared to when I was first diagnosed. If initial treatment methods aren't working for you, it's important to be your own advocate and make yourself heard. Don't lose hope because there are paths you can take to get the care you need.

How did you cope with the personal challenges of living with the disease, and how did you turn those challenges into opportunities?

There's often stigma around living with psoriasis, and it can be difficult to speak up about symptoms. Even day-to-day interactions, like grocery shopping, and more intimate moments with your partner—especially with genital psoriasis—can come with embarrassment. I felt uncomfortable about my skin for a long time, but I've come to embrace it. I've met wonderful people because of this disease, and I've even had the opportunity to become a mentor to others.  My husband even attends psoriasis conferences with me and has gained a clearer understanding of the struggles of living with this disease—it's so important to have a healthy support system.

How has the support from your husband influenced your journey?

Having a supportive partner with whom I can have transparent and honest conversations about my psoriasis has been extremely impactful for me. We can discuss our feelings without fear of judgement or rejection. No topic is off limits, and even on days when I'm not feeling my best, or my plaques are aggravated, we maintain a mutual understanding and trust in each other that has been instrumental in my journey. By being open about our feelings, our relationship has blossomed, and we've found new ways to foster intimacy and communicate with each other, such as having check-in conversations with each other about our feelings.

What advice would you give to those experiencing similar situations?

I always tell anyone who is newly diagnosed to do your research. No one knows what you are experiencing better than you do. Understanding the ins and outs of your disease and being able to speak openly about it to your friends, family, and healthcare team is an essential step towards finding a treatment plan that is right for you.

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