Evaluating the Disease-Related Experiences of TikTok Users With Lupus Erythematosus: Qualitative and Content Analysis

    July 2023
    Lindsey J Wanberg, David R. Pearson
    Image of study
    TLDR Lupus patients on TikTok feel isolated, face medical gaslighting, and prefer non-drug treatments.
    This study analyzed 153 TikTok videos from 76 users to understand the experiences of individuals with lupus erythematosus (LE). Key findings include the significant impact of mucocutaneous symptoms like hair loss and rash on mental health and body image, and the frequent portrayal of LE as an "invisible illness" leading to feelings of isolation. Users often reported negative interactions with healthcare workers, citing "medical gaslighting" and diagnostic delays. Nonpharmacologic treatments were viewed more positively than pharmacologic ones. The study highlights the importance of addressing mental health, educating support systems, and improving clinician-patient communication to enhance care for LE patients.
    Discuss this study in the Community →

    Related Community Posts Join

    6 / 17 results
      Diffuse hair loss and scalp biopsies

      community Diffuse hair loss and scalp biopsies

      in Research  692 upvotes 3 months ago
      Scalp biopsies are crucial for diagnosing hair loss conditions like Diffuse Unpatterned Alopecia (DUPA) and retrograde hair loss, as treatments like finasteride and dutasteride may not be effective if other conditions are present. Combining PPAR-GAMMA agonists with retinoids could improve treatments for conditions like Lichen Planopilaris.

      community Hair Remedies that Don't Work for Anybody Seeking Hair Regrowth

      in Treatment  7 upvotes 4 years ago
      Hair loss treatments discussed include minoxidil, finasteride, and RU58841. Salon products and supplements generally don't work for hair regrowth unless there's a severe nutritional deficiency, while hormonal treatments like estrogen and spironolactone can be effective.

      community Finasteride not working isnt it MPB?

      in Finasteride/Dutasteride  5 upvotes 6 months ago
      A user is concerned that finasteride isn't working for their hair loss, questioning if it's due to male pattern baldness or low iron levels. They are advised to take finasteride daily and get blood work done.

    Similar Research

    5 / 1000+ results