When white spots started appearing on my face at 10-years-old, I was afraid. I said a prayer before my first appointment with a dermatologist hoping it wasn’t a sign of something serious.
I was diagnosed with vitiligo, a disorder that’s long been considered “incurable.” My older brother Daniel cried for me that day because he was so worried I’d get bullied.
Vitiligo is an autoimmune condition that causes parts of the skin to turn milky white. Nearly 4 million Americans are harmed by this disease, leaving us with significant discoloration throughout our bodies. We are also more likely to develop other conditions, including Type 1 Diabetes and Crohn’s disease, both of which can lead to life-threatening complications.
Vitiligo’s primary affliction is discoloration, but it can also harm social and career opportunities, making patients liable to a lower quality of life. According to the American Academy of Dermatology, 13% of vitiligo patients have been the subject of job discrimination. Employers even admitted to such actions, with separate research finding that they were concerned their profit margins would lower by hiring vitiligo patients.
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I experienced this when interviewing for a TV news reporting job. I felt confident about my interview and management was impressed with my past reporting. After the interview, they called to confirm one condition of employment: “Are you able to cover up that spot on your eye?”
Despite our experiences, many people continue to believe vitiligo to solely be a cosmetic condition. We must begin acknowledging vitiligo for the disease that it is. Vitiligo can preclude us from being able to participate in social spaces due to stigma and discrimination. The European Academy of Dermatology and Venereology found vitiligo patients to be nearly 5 times more likely to develop depression compared to those without the disease. Vitiligo can lead us to harbor doubts about ourselves and where we fit in a society that seems to not accept us.
Existing treatments provide inconsistent benefits to vitiligo patients. After I was diagnosed, the doctor sent me home with a prescription cream and a warning that the treatment might not work at all. In my case, the cream did cause pigmentation to return to two of the spots on my face, but a spot on my right eyelid never went away and spread to my eyebrow in my early 20s.
Treatment options are now likely to go even further thanks to the development of a recently FDA approved therapy, which can regenerate a high percentage of skin repigmentation in half a year.
Still, even as new medications make their way to vitiligo patients, some health insurers maintain their long-time stance that vitiligo is not a medical ailment, instead viewing it as a cosmetic condition. Such logic remains outmoded, especially when the National Institutes of Health and American Academy of Dermatology are just a few of the several organizations to acknowledge vitiligo as a real medical condition.
To help vitiligo patients fight our condition, we must move on from the outdated view that vitiligo is a cosmetic disease and acknowledge the real psychological harm that it has had on patients. Doing so will allow the medical community to provide us affordable access to the treatments and medications we need to live the fulfilling lives we deserve.
Rep. Analise Ortiz serves the people of Maryvale and Glendale in the Arizona House of Representatives, Legislative District 24. She can be reached at analise@ortizforaz.com.
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