People of Color with psoriasis are more likely to be misdiagnosed. Alisha Bridges, who lives with the condition and advocates for better care, shares her story.

In 1994 my life changed. At 7 years old, I contracted chicken pox — a highly transmissible viral infection causing an itchy, blister-like rash on the skin. For many, the rash came and went, but for me, it was just the beginning of a complicated life.

After about 2 weeks, my grandmother noticed the sores typically left behind by chicken pox seemed to have morphed into something different. The blistery inflamed bumps were gone, but now 90% of my body was covered with a new mystery rash.

My grandmother took me to the doctor, who surveyed my skin and revealed the flaky, itchy, inflamed patches of dry skin that had invaded my body was an autoimmune disease known as psoriasis. I hadn’t been on Earth for a decade yet. I was only in the third grade. And now, I was dealing with an incurable disease.

According to the National Psoriasis Foundation, around 20,000 kids under 10 are diagnosed with psoriasis each year. It’s more common to acquire in adulthood — thus, having psoriasis as a kid was not all that common. As I got older, I realized age was not the only unique factor for my condition.

Being African American with psoriasis added another layer of hardships to my disease that I would later learn affected my ability to be understood and get effective treatments. Psoriasis is found more frequently in white people (3.6%) than African Americans (1.9%).

Sometimes I question the hard data. Is it just 1.9%, or are some Black people missing in the numbers? A related study to the 2014 research that gave us that number found that Black people were more likely to be underdiagnosed.

I had my fair share of inaccurate diagnoses. In high school, a doctor told me that given my psoriasis was not responding to treatment — it might instead be a fungus creeping under the layers of my skin.

In early adulthood, a doctor said that the appearance of my patches did not have the characteristics of psoriasis, most commonly described as red, inflamed patches of skin. Due to the deep purplish-brown rash on my skin, she thought it could be lichen planus — a different autoimmune disease where the immune system mistakenly attacks the skin and mucus membranes causing deep purple lesions on the body. A biopsy confirmed I had psoriasis.

Working as an advocate for 10 years, I have heard countless stories from People of Color who received a misdiagnosis or for whom it took years to get a correct diagnosis due to doctors not understanding how psoriasis appears in darker skin tones.

An older study published in 2004 in the National Health and Nutrition Examination Survey (NHANES) found those undiagnosed with psoriasis were more likely to be non-white. Using data from this study, the estimated proportion of Black participants with psoriasis increased from 8.0% to 12.2% after two dermatologists reassessed the files.

Phototherapy, or light therapy, is a standard treatment for psoriasis that involves exposing the skin to UV light regularly and under medical supervision to slow down the cell production causing psoriasis. I did this treatment on and off for over 10 years with no results.

There are few studies for phototherapy, and the existing ones do not include Blacks. Since there is more melanin in People of Color, there might be a need for a different light prescription. However, without the data, we will never know what is genuinely effective regarding Black skin.

I also experienced challenges when it came to treatments for the scalp. The doctor would prescribe me shampoos to use once a day.

The American Academy of Dermatology (AAD) suggests that Black people should only wash their hair once every week to every other week to keep their hair healthy — another moment of being Black with this condition with unique challenges and circumstances.

Shampoo may help minimize the symptoms of my scalp psoriasis but presents an additional issue of unhealthy hair due to the influx of washes required to use the treatment.

The way I strive to combat these issues is by being involved with advocacy and sharing my story.

Without the stories of people like me, these issues may never change. I am currently involved with several health initiatives to combat inequities in healthcare.

I work with Determi-Nation, a health movement that addresses health inequities for People of Color living with psoriasis, and LITE study, a research initiative about phototherapy at home vs. at the doctor’s office. Our goal is to recruit People of Color to gain a better understanding of how light therapy treats darker skin.

I do not want other people to have to repeat my story.

Alisha M. Bridges is an award-winning writer, public speaker, media consultant, and health activist. She advocates on behalf of patients to bridge the gap between the medical community and patients living with chronic disease. Alisha volunteers with The National Psoriasis Foundation where she speaks openly about her own experience with psoriasis at conferences.