Hi there, I was recently told by my dermatologist that she’s 90% sure I’ve got vitiligo (she wants to take a sample to test to make sure there’s nothing else going on before she diagnoses me for sure.)
I went online to look for tips for caring for my vitiligo and the like but found so many people so uncomfortable in their skin because of it and trying to get rid of it and I struggled to understand why. I’ve always thought it beautiful, so it really confused me.
I am fat, disabled, autistic and visibly queer so I don’t really feel the same weight of beauty standards because of being so on the outer edge of societal norms. I am also privileged in the way that I am white and pale so my vitiligo doesn’t stand out all that much. I think I’ve been ignorant and insensitive and I want to fix that.
I would really love to be more informed and understanding about the community going forward so that I don’t do any harm and I remain mindful. Do you know any good resources that I can read or research? I’m having a hard time finding anything that isn’t about getting rid of it.
I sincerely apologize if any of this comes off poorly, thank you for your time.
Hi!
Yeah it's rather unfortunate that a lot of the material surrounding vitiligo is about getting rid of it </3
I'm sure your dermatologist has probably already discussed this so sorry if I'm just repeating stuff you already know lol. But when it comes to caring for vitiligo the main things you want to pay attention to are things like sun exposure and UV intensity. Wearing sun screen as frequently as possible is also a really good idea. Usually the worst time of day is around noon to one pm but during the summer time it might be an all day thing.
I am not a doctor/dermatologist so cant really offer any medical advice besides the few things I remember my dermatologist telling me when I first got diagnosed years ago.
Idk how in-depth you want to go with the research stuff but there are medical studies out there that talk about genetic factors and what not. A few years ago I did a presentation on it for a biology course in college and luckily I saved it to my personal slides account so I still have the bibliography that I used!
Spritz, Richard A, and Genevieve H L Andersen. “Genetics of Vitiligo.” Dermatologic clinics vol. 35,2 (2017): 245-255. doi:10.1016/j.det.2016.11.013
Al-Shobaili, Hani A. “Update on the genetics characterization of vitiligo.” International journal of health sciences vol. 5,2 (2011): 167-79.
“Vitiligo: MedlinePlus Genetics.” MedlinePlus - Health Information from the National Library of Medicine, https://medlineplus.gov/genetics/condition/vitiligo/#frequency. Accessed 12 Apr. 2021.Boggs, Will.
“Autoimmune Diseases Common in Patients with Vitiligo - The Rheumatologist.” The Rheumatologist, https://www.the-rheumatologist.org/article/autoimmune-diseases-common-in-patients-with-vitiligo/. Accessed 12 Apr. 2021.
“Vitiligo: MedlinePlus Genetics.” MedlinePlus - Health Information from the National Library of Medicine, https://medlineplus.gov/genetics/condition/vitiligo/#frequency. Accessed 12 Apr. 2021.
“Medico-Historical Study of ‘Kilasa’ (Vitiligo/Leucoderma) a Common Skin Disorder - PubMed.” PubMed, https://pubmed.ncbi.nlm.nih.gov/17154114/. Accessed 12 Apr. 2021.
As for when it comes to the community the best research will probably be from just talking to people who've had the condition! Personal anecdotes are def the way to go, so searching for any community groups might be worth a shot!
Also don't worry you don't have top apologize <3


















