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3.
JMIR Infodemiology ; 4: e51211, 2024 04 17.
Article in English | MEDLINE | ID: mdl-38631030

ABSTRACT

BACKGROUND: Lupus erythematosus (LE) is an autoimmune condition that is associated with significant detriments to quality of life and daily functioning. TikTok, a popular social networking platform for sharing short videos, provides a unique opportunity to understand experiences with LE within a nonclinical sample, a population that is understudied in LE research. This is the first qualitative study that explores LE experiences using the TikTok platform. OBJECTIVE: This study aims to evaluate the disease-related experiences of TikTok users with LE using qualitative and content analysis. METHODS: TikTok videos were included if the hashtags included #lupus, were downloadable, were in English, and involved the personal experience of an individual with LE. A codebook was developed using a standardized inductive approach of iterative coding until saturation was reached. NVivo (Lumivero), a qualitative analysis software platform, was used to code videos and perform content analysis. Inductive thematic analysis was used to derive themes from the data. RESULTS: A total of 153 TikTok videos met the inclusion criteria. The most common codes were experiences with symptoms (106/153, 69.3%), mucocutaneous symptoms (61/153, 39.9%), and experiences with treatment (59/153, 38.6%). Experiences with symptoms and mucocutaneous symptoms had the greatest cumulative views (25,381,074 and 14,879,109 views, respectively). Five thematic conclusions were derived from the data: (1) mucocutaneous symptoms had profound effects on the mental health and body image of TikTok users with LE; (2) TikTok users' negative experiences with health care workers were often derived from diagnostic delays and perceptions of "medical gaslighting"; (3) TikTok users tended to portray pharmacologic and nonpharmacologic interventions, such as diet and naturopathic remedies, positively, whereas pharmacologic treatments were portrayed negatively or referred to as "chemotherapy"; (4) LE symptoms, particularly musculoskeletal symptoms and fatigue, interfered with users' daily functioning; and (5) although TikTok users frequently had strong support systems, feelings of isolation were often attributed to battling an "invisible illness." CONCLUSIONS: This study demonstrates that social media can provide important, clinically relevant information for health practitioners caring for patients with chronic conditions such as LE. As mucocutaneous symptoms were the predominant drivers of distress in our sample, the treatment of hair loss and rash is vital in this population. However, pharmacologic therapies were often depicted negatively, reinforcing the significance of discussions on the safety and effectiveness of these treatments. In addition, while TikTok users demonstrated robust support systems, feelings of having an "invisible illness" and "medical gaslighting" dominated negative interactions with others. This underscores the importance of providing validation in clinical interactions.


Subject(s)
Lupus Erythematosus, Systemic , Social Media , Humans , Quality of Life
4.
J Med Case Rep ; 17(1): 408, 2023 Sep 26.
Article in English | MEDLINE | ID: mdl-37749657

ABSTRACT

BACKGROUND: Autoimmune bullous disorders develop due to autoantibodies targeting intercellular adhesion proteins of hemidesmosomes and desmosomes and may be triggered by viral infections and vaccines. Recent reports suggest that the coronavirus disease 2019 vaccination may trigger flares or exacerbations of preexisting autoimmune diseases, including new onset autoimmune bullous disorders. There are less data on whether vaccination against severe acute respiratory syndrome coronavirus 2 may also exacerbate preexisting autoimmune bullous disorders. CASE PRESENTATION: Here we present three cases, two white males (ages 69 years and 88 years) with bullous pemphigoid and one white 50-year-old female with pemphigus foliaceus, wherein all individuals developed minor, tractable flares of their preexisting autoimmune bullous disorders after receiving the coronavirus disease 2019 vaccination, which were readily treatable with topical or low-dose systemic corticosteroids. CONCLUSIONS: Dermatologists managing patients with autoimmune bullous disorders should be cognizant of the uncommon potential for flares of the disorder following vaccination for severe acute respiratory syndrome coronavirus 2. Flares of bullous pemphigoid and pemphigus foliaceus following vaccination for severe acute respiratory syndrome coronavirus 2 in these cases were mild and tractable.


Subject(s)
Autoimmune Diseases , COVID-19 , Pemphigoid, Bullous , Pemphigus , Female , Male , Humans , Middle Aged , SARS-CoV-2 , Vaccination/adverse effects
7.
Int J Womens Dermatol ; 8(3): e042, 2022 Oct.
Article in English | MEDLINE | ID: mdl-36000015

ABSTRACT

Background: Lichen sclerosus (LS) and lichen planus (LP) are inflammatory diseases that demonstrate genital and extra-genital manifestations. Genital involvement may result in pruritus, sexual dysfunction, pain, and irritation. It is intuitive that the severity of symptoms may result in functional impairment and emotional distress, leading to a reduction in quality of life (QoL). Objective: Investigate the current literature on the impact of genital LS and LP on QoL. Methods: A literature review was performed using PubMed and results were summarized. Articles published between 1994 and 2020 were screened and reviewed by both the authors. Results: These diseases have been assessed with dermatological assessments, such as the Skindex-29 and the Dermatology Life Quality Index, general health surveys such as the Short Form-12 questionnaire, and mental health instruments including the Beck Depression Inventory, and others; these instruments consistently demonstrate impaired QoL. It follows that treatment may reduce these symptoms. Interventions, such as photodynamic therapy, have demonstrated improvement in the depressive symptoms that impact QoL. Although both females and males experience a reduction in QoL related to these diseases, they experience the symptomatology differently. Through interviewing, male patients were more likely to report no symptoms compared with female patients, while female patients were also more likely to report worse QoL in the work-school domain of the Dermatology Life Quality Index as compared with male patients. Limitations: Few studies have addressed the effect of disease severity or treatment on QoL. Conclusions: Understanding how genital LS and LP contribute to reduced QoL for patients is critical for health care providers to better prioritize treatment strategies. Future prospective studies should investigate how QoL correlates with disease severity and response to treatment.

10.
Adv Sci (Weinh) ; 9(25): e2201275, 2022 09.
Article in English | MEDLINE | ID: mdl-35818683

ABSTRACT

Photodetectors that are intimately interfaced with human skin and measure real-time optical irradiance are appealing in the medical profiling of photosensitive diseases. Developing compliant devices for this purpose requires the fabrication of photodetectors with ultraviolet (UV)-enhanced broadband photoresponse and high mechanical flexibility, to ensure precise irradiance measurements across the spectral band critical to dermatological health when directly applied onto curved skin surfaces. Here, a fully 3D printed flexible UV-visible photodetector array is reported that incorporates a hybrid organic-inorganic material system and is integrated with a custom-built portable console to continuously monitor broadband irradiance in-situ. The active materials are formulated by doping polymeric photoactive materials with zinc oxide nanoparticles in order to improve the UV photoresponse and trigger a photomultiplication (PM) effect. The ability of a stand-alone skin-interfaced light intensity monitoring system to detect natural irradiance within the wavelength range of 310-650 nm for nearly 24 h is demonstrated.


Subject(s)
Zinc Oxide , Humans , Light , Monitoring, Physiologic , Polymers , Printing, Three-Dimensional
11.
J Am Board Fam Med ; 35(2): 435-442, 2022.
Article in English | MEDLINE | ID: mdl-35379733

ABSTRACT

Plantar dermatoses (PD) are common, occurring either spontaneously on healthy skin or developing secondarily from previously established foot disease. PD share similar symptoms and morphology, making them challenging to differentiate. A few of the most frequently encountered PD include tinea pedis, psoriasis, contact dermatitis, dyshidrotic dermatitis (or recurrent vesicular palmoplantar dermatitis), and juvenile plantar dermatosis. This review offers practical advice for diagnosing and treating the most common PD in the primary care office.


Subject(s)
Tinea Pedis , Humans , Tinea Pedis/diagnosis , Tinea Pedis/therapy
12.
Article in English | MEDLINE | ID: mdl-35046687

ABSTRACT

Autoimmune and inherited bullous disorders are rare skin diseases that may have a profound negative impact on quality of life (QOL). Common symptoms include pain, pruritus, and scarring, and complications may result in the loss of the ability to perform daily tasks. Diagnosis may have a negative psychological impact, and ongoing management may require a significant allocation of time and resources by both patients and providers. To provide patient-centered care, consideration of these factors is of utmost importance for the dermatologist treating patients with bullous disorders. Herein, we present a review of the primary literature evaluating QOL in autoimmune and inherited bullous disorders, including pemphigus, pemphigoid, epidermolysis bullosa, and Hailey-Hailey disease.

13.
Blood Cells Mol Dis ; 93: 102636, 2022 03.
Article in English | MEDLINE | ID: mdl-34864445

ABSTRACT

Vacuoles, E1, X-linked, autoimmunity, somatic (VEXAS) syndrome is characterized by a pathogenic mutation in UBA1, which leads to protean complications including autoimmunity and myelodysplasia. A 56-year-old man with steroid-dependent, later steroid-refractory cutaneous polyarteritis nodosa and Sweet syndrome developed recurrent daily fever, macrocytic anemia, thrombocytopenia, acute hypoxic respiratory failure, and anasarca. He was eventually diagnosed with Epstein-Barr virus (EBV) viremia and hemophagocytic lymphohistiocytosis (HLH). He improved clinically with rituximab, ruxolitinib, and increased glucocorticoids before expiring from Pseudomonas sepsis. UBA1 exon 3 mutational analysis in myeloid enriched peripheral blood revealed a c.122T>C (p.Met41Thr) pathogenic variant, consistent with VEXAS syndrome. We describe the first case of EBV-associated HLH in a patient diagnosed with VEXAS syndrome. Early identification of this syndrome will be important in order to offer potential therapies before life-threatening complications arise.


Subject(s)
Epstein-Barr Virus Infections , Lymphohistiocytosis, Hemophagocytic , Myelodysplastic Syndromes , Epstein-Barr Virus Infections/complications , Epstein-Barr Virus Infections/drug therapy , Herpesvirus 4, Human , Humans , Lymphohistiocytosis, Hemophagocytic/complications , Lymphohistiocytosis, Hemophagocytic/diagnosis , Lymphohistiocytosis, Hemophagocytic/drug therapy , Male , Middle Aged , Rituximab
16.
J Am Acad Dermatol ; 83(1): 117-122, 2020 Jul.
Article in English | MEDLINE | ID: mdl-32135206

ABSTRACT

BACKGROUND: There is an increased incidence of malignancy in patients with dermatomyositis. It is unknown if the risk differs between the subtypes of dermatomyositis. OBJECTIVE: To (1) compare the prevalence of malignancy-associated dermatomyositis between patients with classic and clinically amyopathic disease and (2) determine factors associated with an increased risk of malignancy-associated disease. METHODS: Retrospective cohort study of 201 patients with adult-onset dermatomyositis prospectively enrolled in a longitudinal dermatomyositis database between July 2008 and April 2018 at an outpatient dermatology urban tertiary referral center. The main outcome measure was a diagnosis of malignancy, excluding nonmelanoma skin cancer. RESULTS: There were 201 patients with adult-onset dermatomyositis: 142 (71%) classic and 59 (29%) clinically amyopathic. Within 2 years of diagnosis, the prevalences of malignancy-associated classic and clinically amyopathic dermatomyositis were 9.9% and 1.7%, respectively. In this time period, patients who were older at dermatomyositis diagnosis (P = .01) and had the classic subtype (P = .04) were significantly more likely to have an underlying malignancy on multivariable regression analysis. LIMITATIONS: This was a retrospective study of prospectively collected data at a single tertiary referral center. CONCLUSION: Older age and classic dermatomyositis are independent risk factors for malignancy-associated dermatomyositis within 2 years of disease onset.


Subject(s)
Dermatomyositis/epidemiology , Neoplasms/epidemiology , Adult , Age of Onset , Comorbidity , Female , Humans , Male , Middle Aged , Prevalence , Retrospective Studies , Risk Factors
19.
Int J Womens Dermatol ; 5(4): 256-260, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31700982

ABSTRACT

It is common for multiple autoimmune diseases to occur in the same patient. However, autoimmune blistering diseases (AIBD) do not commonly associate with dermatomyositis (DM). We performed a literature review and found 12 previous reports that may be attributed to misdiagnosis, underreporting, or true rarity of association. Herein, we present a case of pemphigus vulgaris and a case of mucous membrane pemphigoid associated with DM and review the related literature. AIBD-associated interstitial lung disease, genetic predisposition, potential environmental triggers of both AIBD and DM, drug-related triggers, and paraneoplastic processes are discussed. Dermatologists must be vigilant for a second autoimmune disease in patients with AIBD that may have therapeutic implications.

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