In honor of World Prurigo Day and this year’s theme – ‘Recognize prurigo, act early’ – this article explores how undiagnosed patients can experience isolation and distress when managing the symptoms of their disease, highlighting the importance of increased awareness and more timely diagnosis.

The wait for solutions

For many people living with prurigo nodularis, the journey to diagnosis is long, often due to lack of awareness and lesser prevalence compared to other skin diseases.^1-3

For many patients, diagnosis is delayed as they move through the healthcare system, and this period of suffering encompasses several years. At that time, they get desperate. They lose their social contacts. They suffer day by day. So every day that we save a patient from suffering is important.

– Dr. Matthias Augustin

After years of misunderstood symptoms, repeated consultations and referrals, being able to name the condition can bring relief and reassurance – but the wait to get there can mean patients have to manage the condition alone.^1,4-6 This can unintentionally increase the disease’s impact; feeling misunderstood, withdrawing socially, and potentially leading to experimental symptom management, often leaving patients with lasting physical and emotional challenges.^1,4-6

The road to relief

I felt very lonely, and I think my husband found it even more difficult because all he could say – which is a terrible cardinal sin – was ‘don’t scratch’

– Prurigo nodularis patient⁶

The burden of managing prurigo nodularis while waiting for a formal diagnosis can have a significant impact on mental and social wellbeing.^1,4-6 Constantly navigating and managing symptoms leaves many patients emotionally depleted long before they receive clinical support.^1,4-6

This sense of invisibility at times can lead to social withdrawal and loneliness; relationships can become strained as loved ones struggle to understand the condition’s intensity.^1,4-6 A patient reflected that “sometimes people stare when they see it, some assume it’s contagious, others politely look away. But no one sees the mental exhaustion, the isolation.”⁶ 

The lack of support 

With timely clinical support often lacking and amidst feelings of isolation, patients can try to self-manage their symptoms in an effort to seek relief.^1,4-8 Whilst many experiment with more conventional methods – for instance using skincare more frequently or wearing cotton gloves to prevent damage from scratching – patients have been known to escalate.^4-7,9,10

In the frustrating search for fast relief, some patients say they’ve repurposed everyday objects such as hairbrushes or pumice stones to satisfy the need to scratch, whilst others report using ice packs or taking very hot showers to dull the itch.^6,11-14 Although these may provide temporary respite, the consequence is often further damage to the skin – such as dryness, bleeding, and inflammation – creating a cycle of hope and disappointment.^6,11,13,15

These experiences illustrate just how much people can struggle without support from the healthcare system, highlighting the need for faster diagnosis and a holistic approach to patient care.^1,4,5

Time is of the essence

The experiences shared by patients paint a clear, uncomfortable picture: the longer prurigo nodularis goes unrecognized, the heavier the burden becomes.^1,4-8 Delays in diagnosis leave individuals vulnerable as they manage this complex condition.^1,4-8

Eliminating these challenges requires greater clinical awareness, improved diagnostic pathways, and broader education of prurigo nodularis.^1,4,5,8 By supporting initiatives that improve recognition, like World Prurigo Day, and accelerating awareness of appropriate care, we can reduce unnecessary suffering for patients.

If you are struggling with the symptoms of prurigo nodularis, or the condition is impacting your daily life, consider speaking with a healthcare professional for advice and support.

To find out more about World Prurigo Day, visit www.worldprurigoday.org 

References

1. Kwatra SG, et al. Prurigo nodularis: disease burden, clinical features and approach to management. Br J Dermatol. 2025;193(4):642-652. Doi:10.1093/bjd/ljaf213. 
2. Ständer S, et al. Prevalence of prurigo nodularis in the United States of America: a retrospective database analysis. JAAD Int. 2020;2:28-30. Doi:10.1016/j.jdin.2020.10.009.
3. Huang AH, et al. Real-world prevalence of prurigo nodularis and burden of associated diseases. J Invest Dermatol. 2020;140(2):480-483.e4. Doi:10.1016/j.jid.2019.07.697
4. Rodriguez D, et al. Patient perspectives on living with severe prurigo nodularis. JAMA Dermatol. 2023;159(11):1205-1212. Doi:10.1001/jamadermatol.2023.3251.
5. Schielein L, et al. ‘‘When you do not feel comfortable in your skin, you cannot get out of it’; a qualitative interview study exploring psychosocial impact and coping strategies among patients with prurigo nodularis’: Psychosocial impact and coping strategies among patients with prurigo nodularis. Br J Dermatol. 2024;191(5):845-846. Doi:10.1093/bjd/ljae274.
6. Galderma. Data on file. Understanding the True Impact of Itch: Ethnographic Research. August 2025.
7. Todberg T, et al. Treatment and burden of disease in a cohort of patients with prurigo nodularis: A survey-based study. Acta Derm Venereol. 2020;100:adv000730. Doi:10.2340/00015555-3471.
8. Brooks SG, Yosipovitch G. Prurigo nodularis in 2025: Current and emerging treatments. Clin Dermatol. 2025;43(5):669-680. Doi:10.1016/j.clindermatol.2025.03.013.
9. American Academy of Dermatology. Prurigo nodularis: 9 dermatologists’ tips for relieving the itch. 2021. Accessed June 2026. Available online. 
10. Mayo Clinic Press. Treatments for prurigo nodularis. 2023. Accessed June 2026. Available online.
11. Lee JH, et al. A study on scratching behavior characteristics in patients with various types of chronic pruritus. Allergy Asthma Immunol Res. 2025;17(3):371-383. Doi:10.4168/aair.2025.17.3.371. 
12. Zeidler C, et al. Clinical aspects and management of chronic itch. J Allergy Clin Immunol. 2023;152(1):1-10. Doi: 10.1016/j.jaci.2023.04.018. 
13. Benedetti J, Merola JF. Itching (pruritus). MSD Manual Professional Edition. 2025. Accessed June 2026. Available online. 
14. Yosipovitch G, et al. Scratching and noxious heat stimuli inhibit itch in humans: a psychophysical study. Br J Dermatol. 2007;156(4):629-634. Doi:10.1111/j.1365-2133.2006.07711.x.
15. Yosipovitch G, et al. Skin barrier damage and itch: review of mechanisms. Acta Derm Venereol. 2019;99:1-8. Doi:10.2340/00015555-3296.