Importance of and instruction for starting a vitiligo patient support group.

Starting and maintaining a vitiligo support group can appear to be a daunting task. However, with proper planning and organization, the process can become manageable and rewarding. Our guide details the reasons to start a vitiligo support group, how to start a group, how to run a group, and how to promote a group. Legal protections and details regarding retention and funding are also discussed. The authors have extensive experience leading and/or assisting support groups for vitiligo and other disease states and we also sought out other current vitiligo support leaders for their valuable insights. Previous research has found that support groups for various medical conditions may have a protective effect and membership can build resilience among participants as well as foster a sense of hope regarding their disease. Further, groups can provide a network for those living with vitiligo to connect with, uplift, and learn from one another. These groups provide the opportunity to initiate lifelong connections with those facing similar circumstances and provide members with new insight and coping strategies. Members can share perspectives with one another and empower one another. We encourage dermatologists to provide vitiligo patients with support group information and to consider being involved in, starting, or otherwise supporting them.

A Multi-Centered Case-Control Study of Vitiligo Support Groups and Quality of Life.

BACKGROUND: There is limited research on the association between vitiligo support group membership and patient quality of life (QoL). OBJECTIVES: To explore the association between support groups and QoL in those with vitiligo by evaluating and comparing the QoL of vitiligo support group members and non-support group members. METHODS: Support group members (n=135) and non-support group members (n=129) were recruited from the Global Vitiligo Foundation (GVF), and three academic medical centers respectively. Patients completed the Vitiligo-Specific Quality of Life (VitiQoL) instrument and a demographic survey. RESULTS: Mean VitiQoL scores for support group members were higher than non-support group members (48.6 ± 23.6 vs 33.0 ± 23.8; P-value < 0.0001), highlighting more negatively impacted QoL. Support group members were less likely to be undergoing treatment (27.4% vs 53.5%; P-value = <0.0001) and were more likely to report duration of vitiligo for >20 years (38.5% vs 19.4%; P-value = 0.0007). CONCLUSIONS: Vitiligo support group membership is associated with worse QoL. Individuals with vitiligo who have worse QoL, chronic, and/or untreated vitiligo may be more likely to seek out vitiligo support groups. Support group referral should be considered in the therapeutic management of vitiligo, particularly in patients whose QoL is more significantly impacted, who fail or are who are without access to treatment or have longstanding disease. J Drugs Dermatol. 2021;20(6):672-675. doi:10.36849/JDD.5706.

Prospective Controlled Trial for the Treatment of Acne Keloidalis Nuchae With a Long-Pulsed Neodymium-Doped Yttrium-Aluminum-Garnet Laser.

BACKGROUND: Acne keloidalis nuchae (AKN) is a chronic scarring folliculitis with limited interventions of both high efficacy and low morbidity. OBJECTIVE: To assess the efficacy of the long-pulsed 1064-nm neodymium-doped yttrium-aluminum-garnet (Nd:YAG) laser and topical steroids as a treatment for AKN compared to topical steroids alone. METHODS: We conducted a single-blinded, randomised, within-patient right-left controlled trial (n = 13). Eight monthly laser treatments were performed on the treated half of the scalp, and triamcinolone 0.1% cream was applied to both sides twice daily. Treatment response was measured using a global assessment score (0 to 10). RESULTS: The laser-treated side showed greater improvement in global assessment score. The mean change was -3.2 (-49.2%) on the treated side and -2.2 (-32.8%) on the control side ( P = .144). Papules responded well to laser treatment, while larger plaques and nodules showed limited improvement. In the 10 patients with papules only, the difference in improvement between the treated and control sides was statistically significant (mean change was -3.5 [-59.3%] for the treated side and -1.8 [-29.5%] for the control side, P = .031). LIMITATIONS: This study was limited by a small sample size and a high dropout rate, as well as the lack of a standardised scoring system for AKN. CONCLUSION: The long-pulsed Nd:YAG laser in conjunction with topical steroids shows promising results in the treatment of AKN, particularly the papular component, and is well tolerated by patients.

Long-term follow-up of patients undergoing autologous noncultured melanocyte-keratinocyte transplantation for vitiligo and other leukodermas.

BACKGROUND: Persistence of pigmentation after a melanocyte-keratinocyte transplantation procedure (MKTP) is an important consideration for efficacy. OBJECTIVE: We sought to determine long-term repigmentation of MKTP in vitiligo and other leukodermas. METHODS: A retrospective review of electronic medical records was conducted for all MKTPs performed at Henry Ford Hospital between January 2009 and April 2014. Repigmentation was assessed by a 5-point grading scale (poor to excellent) and Vitiligo Area Scoring Index (VASI). RESULTS: One hundred patients had MKTP performed at 236 anatomically-based lesions (ABLs); 63 patients with 157 ABLs had long-term data available (12-72 months; median, 24 months). Segmental vitiligo, nonsegmental vitiligo, and physical leukoderma demonstrated improvement in VASI scores: -75.6 ± 24.6%, -59.2 ± 36.6%, and -32.4 ± 33.5%, respectively. In vitiligo, at 24, 48, and 72 months after MKTP, 53%, 64%, and 53% of ABLs, respectively, maintained >75% repigmentation. Skin phototype, age, and anatomic location of ABLs had no significant effect on the outcome of treatment. LIMITATIONS: Limitations of the study include the retrospective design with uncontrolled, postoperative adjuvant treatments and inconsistent compliance to scheduled follow-up evaluations. CONCLUSIONS: MKTP provides satisfactory long-term repigmentation in the majority of appropriately selected patients with leukoderma. MKTP can maintain repigmentation for at least 72 months.

Quality of Life in a Vitiligo Support Group.

BACKGROUND: No study has examined the impact of vitiligo support group membership on vitiligo patient quality of life (QoL).

OBJECTIVE: We sought to examine the QoL impact of vitiligo support groups by comparing QoL and associated patient characteristics between vitiligo patients who are and are not members of a vitiligo support group.

METHODS: Members of a Henry Ford Hospital-sponsored, Southeast Michigan Vitiligo Support Group were compared to non-member vitiligo patients recruited from a previous study cohort.17 Eligible patients were asked to complete the Dermatology Life Quality Index (DLQI) and a study-specific questionnaire designed to collect relevant patient characteristics.

RESULTS: The mean DLQI scores for the support group members and non-members were similar (7.1 ± 5.4 and 6.0 ± 6.5, respectively; P-value 0.2), despite the support group members reporting more severe overall disease and increased disease severity in exposed portions of the body. The African-American: Caucasian ratio and the prevalence of unemployment were both significantly higher among the support group participants. LIMITATIONS: Small sample size may have limited the study's ability to demonstrate the differences between the support group participants and the controls.

CONCLUSIONS: The similar QoL despite an increased prevalence of poorer QoL indicators among the support group participants suggests a protective effect of support group membership.

J Drugs Dermatol. 2017;16(4):344-350.

Increased circulating Th17 cells and elevated serum levels of TGF-beta and IL-21 are correlated with human non-segmental vitiligo development.

Although non-segmental vitiligo (NSV) results from the autoimmune destruction of melanocytes, the detailed immune mechanisms have not yet been fully elucidated. Th17 cells have been identified to be implicated in human autoimmune diseases. In this study, the frequencies of peripheral blood Th17 cells and serum levels of IL-17A and Th17 cell-related cytokines were examined in 45 patients with active NSV compared to 45 race-, gender-, and age-matched healthy controls. Our results showed increased circulating Th17 cell frequencies and elevated serum IL-17A, TGF-ß1, and IL-21 levels in patients with NSV. Meanwhile, the increased Th17 cell frequencies are positively correlated with serum TGF-ß1 level, and the body surface area of lesions is positively correlated with elevated TGF-ß1 and IL-21 levels and Th17 cell frequencies. Furthermore, positive correlation was identified between Th17 and Th1 cell frequencies in patients with NSV. These results further indicate the potential involvement of Th17 cells and the collaborative contribution of Th17 and Th1 in NSV development, and suggest that the elevated serum TGF-ß1 and IL-21 levels could contribute to enhanced Th17 cell differentiation in NSV.

Erythema dyschromicum perstans in a Caucasian pediatric patient.

Erythema dyschromicum perstans (EDP), or ashy dermatosis, is characterized by oval, blue-gray macules, which are completely asymptomatic. In adults, the condition is primarily seen in patients of color, most commonly those of Hispanic descent, and typically follows a chronic course. We describe a pediatric case of EDP in a Caucasian patient. In the pediatric population, EDP is more commonly observed in Caucasian patients and often shows significant recovery or complete resolution in a matter of years. This case report outlines the differences in EDP between adult and pediatric patients.

Systemic analyses of immunophenotypes of peripheral T cells in non-segmental vitiligo: implication of defective natural killer T cells.

Although it is widely believed that non-segmental vitiligo (NSV) results from the autoimmune destruction of melanocytes, a clear understanding of defects in immune tolerance, which mediate this uncontrolled self-reactivity, is still lacking. In the present study, we systemically evaluated circulating regulatory T (Treg) cells, including CD4(+) CD25(+) FoxP3(+) Treg cells and invariant natural killer T (iNKT) cells, as well as naïve and memory CD4(+) and CD8(+) T cells and their cytokine production, in a cohort of 43 progressive NSV patients with race-, gender-, and age-matched healthy controls. We found that the general immunophenotypes of CD4(+) and CD8(+) T cells and the percentage of CD4(+) CD25(+) FoxP3(+) Tregs were comparable between NSV and healthy controls. However, percentages of peripheral iNKT cells were significantly decreased in NSV patients compared to that in healthy controls. Our data confirm the previous notion that the percentage of peripheral CD4(+) CD25(+) FoxP3(+) Tregs remains unaltered in NSV and suggests the involvement of defective iNKT cells in the pathogenesis of NSV.

Melanocyte-keratinocyte transplantation procedure in the treatment of vitiligo: the experience of an academic medical center in the United States.

BACKGROUND: Vitiligo is a disfiguring disease with limited treatment options. Surgical treatment is underused in the United States because of perceived risk of infection, costs, and difficulty of the procedure. OBJECTIVE: We sought to determine the efficacy and safety of the melanocyte-keratinocyte transplantation procedure (MKTP) in an academic dermatology department in the United States. METHODS: This prospective, uncontrolled, open-label study enrolled patients aged 18 years or older with a self-reported history of vitiligo and no new or expanding lesions for at least 6 months before surgery. Patients with a history of koebnerization or keloid formation were excluded. Patients underwent autologous MKTP. Repigmentation during a 3- to 6-month follow-up period was assessed categorically and by modified Vitiligo Area Scoring Index. Safety was assessed by frequency of adverse events. RESULTS: Of the 28 patients who underwent 36 procedures, 23 patients who underwent 29 procedures completed the 3- to 6-month follow-up period. Data for these 29 procedures show excellent repigmentation (ie, 95%-100%) after the MKTP in 17%, and good repigmentation (ie, 65%-94%) in 31%. Fair (64%-25%) and poor (24%-0%) repigmentation were achieved in 10% and 41% of patients, respectively. Average percent change in Vitiligo Area Scoring Index was -45% (95% confidence interval -64% to -26%), signifying an improvement in pigmentation. LIMITATIONS: Limitations include small sample size and lack of a control group. CONCLUSIONS: The MKTP is an effective and well-tolerated procedure based upon categorical and Vitiligo Area Scoring Index assessments of repigmentation.

Quality of life assessment and disease experience of patient members of a web-based hydroa vacciniforme support group.

BACKGROUND/PURPOSE: Hydroa vacciniforme (HV) is a rare photodermatosis that primarily affects children. It is characterized by photodistributed vesicles that heal with scarring. The purposes of this study are to perform the initial investigation into the effect of HV on quality of life (QoL) and gain insight into disease diagnosis and management. METHODS: Using the listserv from a web-based, international HV support group, either the Dermatology Life Quality Index (DLQI) or the Children's DLQI (CDLQI), and an HV-specific questionnaire were administered. RESULTS: Fifteen HV patients participated, nine (60%) males and six (40%) females. Median age at onset was 7 years, and 11/15 (73%) were younger than 18 years. The majority of patients were Caucasian (73%). Children cited life quality as being negatively impacted by an inability to play outdoors while adults noted QoL influences due to limitations on clothing choices. The mean CLDLQI and DLQI scores, 12.1 and 8.5, respectively, suggest a higher negative QoL impact than previously reported indices for generalized eczema, atopic dermatitis, and psoriasis. CONCLUSION: When compared with other dermatoses, HV appears to have an equal or greater impact on patients' QoL. Dermatologists should be aware of the psychosociologic impact of this disease, especially on young HV patients.

Comparison of electrodesiccation and potassium-titanyl-phosphate laser for treatment of dermatosis papulosa nigra.

BACKGROUND: There is a lack of randomized split-face studies investigating treatments for dermatosis papulosa nigra (DPN) in dark skin. OBJECTIVE: To compare the efficacy, safety, and tolerability of potassium-titanyl-phosphate (KTP) laser with efficacy, safety, and tolerability of electrodesiccation in the treatment of DPN in subjects with Fitzpatrick skin phototypes IV to VI. METHODS: Fourteen subjects with Fitzpatrick skin phototypes IV to VI were randomized to receive two KTP laser treatments 4 weeks apart to half of the face. The contralateral half received two electrodesiccation treatments 4 weeks apart. Response was evaluated by photography reviewed by blinded dermatologists at 4 weeks after the second treatment. A treatment quality questionnaire about side effects and cosmetic outcome was also administered. RESULTS: Difference in improvement of DPN between the KTP side and the electrodesiccation side per each rater (p=.99, p=.54) and per raters combined (p=.50) did not reach statistical significance. There was no treatment difference for subjective effectiveness (p=.06) or subjective confidence improvement (p=.99), although there was a significant treatment difference for subjective discomfort (p=.002) in favor of KTP. Both treatments were well tolerated without significant adverse effects. CONCLUSIONS: Although treatment of DPN with KTP laser and electrodesiccation are comparable in efficacy, KTP laser is preferable for patient comfort.

Cutaneous T-cell lymphoma and Staphylococcus aureus colonization.

BACKGROUND: Bacterial infections are a common complication of cutaneous T-cell lymphoma (CTCL). The most common pathogen of cutaneous infections in CTCL patients is Staphylococcus aureus. OBJECTIVE: The purpose of this study was to assess S aureus colonization rates among CTCL subjects compared to control subjects. METHODS: Fifty subjects with CTCL, 25 psoriasis control subjects, and 25 healthy control subjects were included in this study. Culture swabs were obtained from nares and lesional skin or normal skin in the healthy controls. RESULTS: S aureus colonization rates were 44% in CTCL subjects, 48% in psoriasis subjects, and 28% in healthy control subjects (P = .29). LIMITATIONS: The sample size was small, and the exclusion criteria resulted in an underestimation of the colonization rate. CONCLUSION: There was a trend for higher methicillin-sensitive S aureus colonization in the CTCL group compared with healthy control subjects. S aureus colonization may be directly related to body surface area of CTCL.

Childhood vitiligo.

Vitiligo is a depigmentation disorder resulting from autoimmune destruction of cutaneous melanocytes. The psychosocial ramifications of this often disfiguring disease can be substantial. Half of the patients with vitiligo experience disease onset in childhood. Although largely similar to the disease in adults, pediatric vitiligo does have differences in epidemiology, associations, and treatment. We review vitiligo as it relates to the pediatric population, emphasizing key differences with adults and the latest treatment advances.

Vitiligo: a sign of systemic disease.

Vitiligo reflects a systemic process that has important implications beyond the skin. These include other autoimmune diseases and ocular and neurological abnormalities. Alezzandrini syndrome and Vogt-Koyanagi-Harada syndrome particularly exemplify this relationship. In addition, vitiligo may be confused with other systemic disorders, including tuberous sclerosis, progressive systemic sclerosis (scleroderma), melanoma, and, in endemic regions, leprosy. We describe these associations and emphasize the importance of depigmenting disorders.