Views and Beliefs of Vitiligo Patients in Online Discussion Forums: A Qualitative Study
Individuals with chronic illnesses turn to online communities to engage in asynchronous peer-to-peer exchanges to better understand and manage their disease. Messages and advice exchanged by online users with vitiligo are not well characterized. We conducted a qualitative study to explore the content exchanged by individuals with vitiligo in online forums. An interpretive research paradigm was utilized to assess public online forum content. A systematic search using the phrases online forum vitiligo support, vitiligo online message board, and vitiligo forums identified 39 relevant forums; 9 of them met inclusion criteria, with 382 total anonymous users. Major themes and subthemes included vitiligo disease management, homeopathy/home remedies, psychosocial impact, public perceptions, and camouflage/concealment.
Practice Points
- Online forums provide invaluable insight on vitiligo disease management, psychosocial impact, and burden on quality of life. Patient care can be improved by inquiring where patients seek information and whether online forums are utilized.
- Commonly discussed topics in online forums were cosmetic concealment of vitiligo lesions and homeopathy or “cure” discussions. Health care providers can engage in honest conversations about evidence-based medical treatments for vitiligo. The interest in cosmetic management highlights a relevant research area in this field.
- Health care providers can better serve patients with vitiligo by providing online resources that are reputable and can help guide patients to credible internet sources such as the Global Vitiligo Foundation.
Beliefs on Alternative Medicine: Homeopathy and Alternative Regimens—Although some threads started with a post asking for the best treatments, others initiated a discussion by posting “best herbal treatments for cure” or “how to cure my vitiligo,” emphasizing the beliefs and wishes for a cure for vitiligo. Alternative therapies that users endorsed included apple cider vinegar, toothpaste, vitamins, and Ayurvedic treatment, among others. Dietary plans were popular, with users claiming success with dietary alterations in stopping and preventing lesion progression. For example, individuals felt that avoidance of sugar, meat, dairy, and citrus fruits or drinks and consumption of only filtered water were crucial to preventing further lesion spread and resulted in their “cure”:
“Don’t eat chocolate, wine (made of grapes), coffee, or tea if you don’t want to have vitiligo or let it get worse. Take Vitamin B, biotin, and nuts for Vitamin E.”
Other dangerous messages pitted treatments by health professionals against beliefs in homeopathy:
“I feel that vitiligo treatment is all in your diet and vitamins. All that medicine and UV lights is a no-no . . .w ith every medicine there is a side effect. The doctors could be healing your vitiligo and severely damaging you inside and out, and you won’t know until years later.”
There was a minor presence of users advising against homeopathy and the associated misinformation and inaccurate claims on curing vitiligo, though this group was small in comparison to the number of users posting outlandish claims on cure:
“There is no cure . . . It’s where your immune system attacks your skin cells causing loss of pigmentation. The skin that has lost the pigmentation can’t be reversed.”
Interactions With the Public and Health Care Providers—Those with vitiligo encounter unique situations in public and in their daily lives. Many of the accounts shared anecdotal stories on how patients have handled the stigma and discrimination faced:
“I have had to face discrimination at school, public places, college, functions, and every new person I have met has asked me this: ‘how did this happen?’”
Those with vitiligo even stated how they wished others would deal with their condition out in public, hoping that others would directly ask what the lesions were instead of the more hurtful staring. There were many stories in which users said others feel vitiligo was contagious or “dirty” and stressed that the condition is not infectious:
“I refer to myself as ‘camo-man’ and reassure people I come into contact with that it is not contagious.”
“Once I was eating at a restaurant . . . and a little girl said to her mom, ‘Look, Mom, that lady doesn’t wash her arms, look how dirty they are.’ That just broke my heart.”
