3 Unique Challenges of Psoriasis for People of Color
Research states African Americans and other people of color are less likely to have psoriasis, but I often wonder is it true? Are we less likely to have the condition or are we more likely to be misdiagnosed and undertreated? As a woman of color who has lived with psoriasis for 23 years, I remember the nuance of dealing with different doctors who just didn't seem to understand my unique needs and challenges. I always felt like a science project among doctors. Here are 3 unique challenges of psoriasis for people of color.
It's not in the textbook
Psoriasis is often described as red, inflamed, dry, patchy skin. My psoriasis has never been red, and like many other people of color, the color of my psoriasis has ranged from a dark brown to purple. When people first encounter psoriasis the first stop is normally to a general physician who typically doesn't specialize in skin and may not know the true symptoms of psoriasis. They may give the patient a few topicals and if they don't work refer them to a dermatologist. There are a few tests for skin conditions, but most times psoriasis is determined by a dermatologist simply surveying the skin, following by different prescriptions to see what works and what does not. The issue with defining psoriasis as "red" puts people of color at a disadvantage and increases their chances of being misdiagnosed because the color of their disease may not appear as the textbook definition, so it may be assumed by medical professions who aren't well versed in skin of other that these individuals have another disease. I've been misdiagnosed for having a fungus and some other disease I can hardly pronounce which can be read about here. Being misdiagnosed is a problem because it further hinders an individual from obtaining an actual treatment which works, possibly exposes them to a lot of unnecessary side effects and is a waste of time and money.
The treatment doesn't work for me
The next issue with being a person of color with psoriasis is there are treatments given to us that may not be as effective for us compared to our fairer skin counterparts. One example of possible ineffective treatments for people of color is the UVA/UBA phototherapy light treatments. Research on the effectiveness of light treatment for psoriasis is understudied especially among people of color. Due to the high amounts of melanin for people of color UVA/UVB and sun rays penetrate our skin differently, this factor hasn't been deeply studied. The difference in having high amounts of melanin could mean people of color may need more UVA/UBA light than what's given as the typical prescription. As a child, I did phototherapy for 10 years with no results. Currently, I'm a patient advisor for a 5 year research study which compares clinical light therapy versus home light therapy in which people of color will be included in the study, hopefully, it gives the medical world better insight on the effectiveness of light therapy for people of color. Another ineffective treatment is usually the options provided for scalp psoriasis. Most of the shampoos on the market require use 2-3 a week and for African-Americans, we just don't need to wash our hair that much and doing so could actually cause damage to our curly coils.
The representation for people of color lack in clinical trials
If you look at the participation results of clinical trials for research involving psoriasis you won't find a large number of people of color. Like in society we are usually the minority in research which poses a big problem some of which was mentioned earlier in regards to knowing the effectiveness of light treatment. Without a fair representation in clinical trials, we won't know if there is a difference in the effectiveness of treatments for people of color. The lack of representation could stem from many causes which are lack of trust of medical professionals due to unethical experiences which involved people of color including the Tuskegee Experiment and forced sterilization for women of color in North Carolina. Another cause of lack of representation could be due to accessibility and knowledge of clinical trial opportunities among people of color.
If you are a person of color how many doctors did you have to see before you were diagnoised with psoriasis? What diseases were you told you had prior to finding out you had psoriasis? And what advice can you give to others walking in your shoes?
How often do you experience brain fog?