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Photo courtesy of Diane Talbert.

When Diane Talbert was just 5 years old, she developed itchy patches of skin all over her body. Her family, who had limited resources, tried a variety of treatments to solve the issue. They applied a salve meant for horses to her badly cracked skin. Her mom put socks on Talbert’s hands to keep her from scratching while she was asleep. None of these methods were successful.

The following year, Talbert was not allowed to start school for fear that her skin issues were contagious and would spread to classmates. She was placed in a hospital quarantine for 3 months and given ineffective treatments. They even shaved her hair.

A few days into the isolation, a dermatologist had a diagnosis and an explanation for the itchy, flaky patches on her body: psoriasis.

Psoriasis is a chronic autoimmune condition. It occurs when the body produces skin cells too rapidly. The cells don’t have time to fall off before the body makes more cells. The result can be thick, scaly patches of dry, sometimes painful skin. These patches can even crack and bleed.

Talbert spent the next few decades covering up her arms and legs, trying to hide the flakes and patches. She didn’t own any short-sleeve blouses, and she’d only wear a dress or skirt with four layers of pantyhose. Even today, at 65 years old, she has never worn shorts in public.

During this time, she also tried dozens of hair styling techniques to hide the psoriasis on her scalp. Here, Talbert shares what she’s found that works for scalp psoriasis. She also shares what message she wants people living with this condition to know.

This interview has been edited for brevity, length, and clarity.

I developed psoriasis in 1963 when I was 5 years old. I don’t remember having it at 5, but I do remember having it at 6. This memory sticks with me because it was my first day of school. I wasn’t allowed to attend because they thought I was contagious. I was around 70–80% covered at that point. I was taken to a local hospital, and a specialist was called in. They diagnosed me with psoriasis. The psoriasis was so thick on my scalp that my head was shaved.

Over the years, I have tried hundreds of hairstyles. As of today, I wear a lot of protective styles. Getting a weave is my go-to. It helps protect my scalp and hides the flakes.

If I don’t have a weave, or if I have an important gig coming up, I will wear a wig.

I used to get perms, but the chemicals hurt me too much. I will get my hair flat ironed, which doesn’t bother me too much and will last for a few days.

Do you use any over-the-counter treatments or prescriptions?

I use a prescription shampoo weekly, and at times, I will use a topical steroid foam. But mostly, I use a medicated shampoo every 2 weeks.

What else have you found that works well?

I have used many oils, plus Vaseline. I use Jamaican black castor oil, olive oil, and tea tree oils. These help with my inflammation.

What styling techniques do you avoid?

I don’t get perms. I use no chemicals and no straightening products, including straightening combs.

Photo courtesy of Diane Talbert.

I did, but it took many years. There have been times when stylists wouldn’t do my hair.

Trying to explain to them that I have psoriatic arthritis also has its challenges. There are times I can’t lean back to get my hair washed.

My stylist now knows that I have psoriasis, and it’s not a case of bad dandruff. She also understands that you can’t take a comb and try to scratch it out. She knows that she has to be very gentle and not scrub my scalp too hard. Doing that could damage it more.

I would say that as of today, the only issue I face is some flaking. I am older with gray hair. I want to dye it, but it is not pleasant and does sting.

People with scalp psoriasis wash their hair. And we are not dirty.

But we also can’t wash as often as some other people might. I get very upset when doctors give patients a medicated shampoo to use every day.

Most Black women that I know can’t wash their hair three or four times a week anyway. Our hair would be very dry and most likely start breaking off.

Find your tribe. We should surround ourselves with supportive Black women who get it and who are willing to help us.

Finding a good dermatologist is also key. Just getting the proper treatment has major benefits.

You must be your own best advocate. Educate yourself, but also learn to educate others, especially the healthcare community. Make them understand that we can’t wash our hair every day and that it’s not only the scalp psoriasis that we have to deal with but our different hair types and styles.

Unfortunately, awareness of psoriasis and psoriatic arthritis is low in the African American community. My goal is to help find more research and bring more awareness to this disease so that we can get the proper treatment that is needed.

Diane Talbert is a blogger, patient advocate, and speaker for psoriasis and psoriatic arthritis. She blogs for Creaky Joints, The Mighty, Medium, Health Union, and Patients Rising. She has been featured in Arthritis Today, Everyday Health, Arthritis Foundation, Black, The New York Times, and Health Central. She has spoken in front of the FDA, goes to Capitol Hill yearly to lobby, and frequently speaks at Town Hall meetings. Diane ran a support group in the Maryland, D.C., and Virginia area for ten years. She also volunteers for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with these conditions. She also loves being a wife, mother, and grandmother.