Understanding Vitiligo Through the Eyes of a Typical Patient in the U.S

Yan Valle ^1* Torello Lotti ² Julia Sigova ^2,3

• ¹ Vitiligo Research Foundation, New York, United States
• ² Department of Dermatology, University of Guglielmo Marconi, Rome, Lazio, Italy
• ³ Pirogov Russian National Research Medical University, Moscow, Moscow Oblast, Russia

This paper expands upon earlier work mapping the Vi#ligo Pa#ent Journey, offering a profile of typical individual naviga7ng the care landscape -from awareness through diagnosis to treatment or coping. 15 Vi7ligo affects roughly 1% of the US popula7on 1 , yet the complexi7es of this journey remain underappreciated by both medical professionals and the broader public.We have a fairly good understanding of the workload for a dermatologist since 1970's, with the prognosis of increased workload due to aging popula7on. 2 The average dermatologist in the U.S. func7ons almost exclusively as a specialist and cares for approximately 120 pa7ents over a 45-hour week, depending on the prac7ce se,ng and loca7on. 3 However, we have just started to understand experience and quality of life of millions of people with vi7ligo, a life-long, typically progressive condi7on with periods of disease erra7c ac7vity and remission. This paper aims to offer insights for dermatology professionals, policymakers, and the general public into the life of a typical vi7ligo pa7ent.Meet "Emily," a representa7ve example of a Caucasian female in her late twen7es in the U.S., named aher the most popular girls' name the year she was born. At 26, Emily has bakled nonsegmental vi7ligo for several years, resul7ng in seven patches covering nearly 15% of her body, most visibly located on her face and neck. 4 The e7ology of Emily's vi7ligo, a chronic autoimmune condi7on that causes random white patches on the skin, remains elusive. It is influenced by gene7c and environmental factors, emo7onal distress, and possibly mild skin trauma that may have triggered the Koebner phenomenon. Emily's general health is a testament to her strong spirit, with a touch of anxiety. Despite a known family history of thyroidi7s, Emily is not aware of any vi7ligo cases in her immediate family, and she suffers only from minor health complica7ons like sleep disturbance and dry eyes. 5The experience of vi7ligo varies significantly by ethnicity, disease severity and lesion loca7on. 16 While Emily's U.S. context provides some level of legal protec7on in the workplace, in other cultures, vi7ligo is ohen regarded as a barrier to forming interpersonal rela7onships, including marriage and employment, compounding the psychological burden. 11 Pa7ents in Africa, Asia, and the Middle East frequently face addi7onal challenges shaped by societal and religious beliefs. 12 For instance, in sub-Saharan Africa, vi7ligo is some7mes confused with leprosy, resul7ng in severe social s7gma7za7on. In India, vi7ligo can significantly impact marriage prospects, especially for women. In Iran, some women with vi7ligo reported that their condi7on was seen as "punishment by God for sins or spiritual impurity."In her teens, Emily endured a three-month delay before seeing a physician, who informed her that condi7on is "nothing to worry about," leaving her in limbo for years. On average, vi7ligo pa7ents obtain a formal diagnosis aher a mean (SD) of 2.4 (4.1) years, which reflects the U.S.'s 37% misdiagnosis rate, which is lower than Europe's 45% and Africa's 56%. 6 Ini7ally turning to online resources for informa7on, Emily experimented with five selfprescribed treatments, experiencing minor, transient successes accompanied by occasional adverse effects. Frustrated with the daily 40-minute makeup regimen to hide her lesions, she finally sought professional help. Aher consul7ng three doctors over 18 months, Emily found a dermatologist whose empathy matched their exper7se-a significant breakthrough in a realm where 46% of American doctors, and even higher percentages in Europe and Africa (65%), consider vi7ligo untreatable.Emily's vi7ligo significantly affects her quality of life across emo7onal, sexual, social, and professional domains. The visible patches on her face and neck have reduced her confidence and heightened self-consciousness, according to the findings of the VALIANT study, where 49% of pa7ents reported similar feelings. 7 In rela7onships, vi7ligo can strain marriages, par7cularly in cultures with s7gmas around the condi7on. Married women, like Emily, ohen face more appearance-related concerns than unmarried ones, poten7ally affec7ng in7macy. Despite these challenges, many find suppor7ve partners, and the risk of passing vi7ligo to children remains generally low unless both parents have the condi7on. 8 Regular skin check-ups and screenings for thyroidi7s and vitamin D deficiency would become rou7ne for her family.Vi7ligo may also impact her career prospects. While some individuals with vi7ligo thrive professionally, many more encounter daily discrimina7on and challenges, par7cularly in appearance-sensi7ve roles. Psychological distress can hinder work performance, but legal protec7ons may apply, as vi7ligo might qualify as a disability under employment law.Currently, Emily is following a treatment plan that includes UV phototherapy, topical medica7ons, and occasional supplements. She is op7mis7c that her regimen will restore her skin color within a year. 9 Even aher successful treatment, she may enjoy remission period for four years, a dura7on that can poten7ally double with diligent follow-up care. Cogni7ve behavioral therapy could bolster her ability to cope, given her tendency towards clinical depression.The financial and social burden of vi7ligo treatment can be significant. 13 Research indicates that pa7ents might spend up to 5,000 Euro for lesion-free skin (in 2009 prices) 17 ; however, Emily has incurred vi7ligo-related expenses of just under $3,500 so far-modest compared to newer drugs cos7ng upwards of $20,000. 10 Medicare offers some relief, but private insurers ohen favor less costly treatments like cor7costeroids before offering financial support.For Emily, vi7ligo is more than a mere skin condi7on; it is an integral part of her life, influencing her personal and social interac7ons without defining her. Although it complicates her life and finances and could affect her career, she perceives it more as a social challenge than a disability. In contrast, individuals with darker skin tones ohen view vi7ligo as a significant hurdle, e.g. with Emily's counterparts in Brazil facing severe discriminatory employment prac7ces at the governmental level. 14 Emily's journey offers a glimpse into the broader challenges faced by vi7ligo pa7ents. Her experience of delayed diagnosis, inadequate ini7al care, and the ongoing search for effec7ve treatment reflects the need for a more holis7c approach -one that includes both medical treatment and psychological support. While each pa7ent's journey is unique, Emily's story highlights the complexi7es of living with vi7ligo and underscores the importance of improving care pathways for those affected.Exercises like the previous Vi7ligo Pa7ent Journey Map and this current expansion of the topic serve a crucial purpose in educa7ng both healthcare professionals and the general public about a disease that affects over two million people in the U.S. alone, and close to 100 million worldwide. By providing a detailed, personalized account of a typical pa7ent's experience, we aim to bridge the gap between clinical understanding and the lived reality of vi7ligo pa7ents.In conclusion, while Emily's story provides valuable insights, it represents just one facet of the vi7ligo experience. By building upon this work and con7nuing to map the pa7ent journey, we can contribute to a more inclusive, effec7ve, and compassionate approach to vi7ligo care and management worldwide.