My family is my greatest gift. For years, I did everything with my husband, our kids, and our adorable dog. Weekend trips. Long vacations. Peaceful walks. Life was truly beautiful. 

But then, prurigo nodularis (PN) changed everything. 

A difficult journey

A few years ago, I started experiencing itching and burning around my neck, shoulders, upper chest, back and arms. Small bumps (also called nodules) appeared all over my skin which became very sore. 

I looked like I was constantly covered in a giant sunburn. It hurt so much and I couldn’t sleep at night. I kept wondering “What is wrong with my skin”? 

Two to three months after my symptoms started, I went to see our family doctor. She evaluated my skin and decided I was suffering from a simple case of mosquito bites, and that prescribing Fenistil ointment would be enough to help. Unfortunately, about 3 weeks later at my follow-up visit, my skin hadn’t improved. 

Next, my doctor referred me to a dermatologist. But months and months of different treatments and UV light therapy went by and still nothing had changed for me—in fact, my symptoms had become even worse! 

Eventually, after being unable to find an explanation for my itch, doctors told me to just see a psychologist. But how could I explain that the pain wasn’t just in my head? 

I used to be fun and easy-going, but as my disease became worse, I couldn’t do anything but cry. When the pain got so bad I couldn’t even sleep in my bed, I would sleep on the cold, tiled bathroom floor, crying until morning. 

I’d hit rock bottom—and my family knew it. 

Finding hope in new knowledge

After over a year of constant pain, my husband happened to see an interview with Professor Dr. Ständer about the Juckreiz Zentrum (“Itching Center”) in Munster, a center dedicated to treating people with types of itch. 

I was intrigued. I started doing a lot of research about the center. My husband encouraged me to go one step further and book an appointment—a decision that would change my life forever. 

At Münster, I underwent my first ever skin biopsy which quickly led to my diagnosis of “prurigo nodularis,” a chronic inflammatory skin disease that causes itchy lumps and bumps to form on your body. 

For the millionth time, I wanted to cry—but this time out of relief. I finally felt like I had the answers I was looking for and I was going to get help. 

For the first time in over a year, I felt hopeful. I had a second chance at the future. 

Moving forward

Since being diagnosed with PN, I’ve wanted to learn as much as possible about the condition—including understanding more about why and how it occurs. 

Recently, I learned about type 2 inflammation which is an overactive immune response that scientists believe may play a role in PN. While this concept is still new to me, I’m interested to learn more. I spent so long without answers, I think it’s really important to get as much information as possible. 

With help from the team at Münster, I feel like I can finally find ways to be my fun, playful self again. I can go out to dinners, go on trips and just spend quality time with my family again. 

While my journey has been difficult, I am very fortunate that my family has been with me every step of the way—and that’s the best gift I could be given. 

Simone, Germany


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