People living with a chronic condition may experience stigmatization on a daily basis. Diane Talbert can relate; a patient-turned-advocate, she has fought her own battle with plaque psoriasis (PsO) and psoriatic arthritis (PsA) for decades.
Diane often felt misunderstood and dismissed as the visible signs of her disease did not match with the images seen in medical textbooks. Delays in diagnosis and treatment compounded the effects of her psoriasis as she navigated the healthcare system as a Black woman, resulting in seemingly insurmountable medical and emotional challenges and obstacles.
She is not alone; living with plaque PsO and PsA is often more difficult for people of color, who may experience a different disease course compared to white patients. A study of African American patients with psoriasis showed that quality of life was worse in people of color compared to Caucasian patients.1,2,3 Engaging medical professionals with knowledge of these conditions for skin of color could be a factor in mitigating delayed treatment.2
Diane turned her situation into a positive experience by learning the power of her voice and serving as a resource for others going through a similar struggle. To help change the psoriatic disease experience for all people affected, she has become an advocate, annual visitor to Capitol Hill, and speaker about autoimmune disease to a variety of groups.
Dr. Lynn McKinley-Grant, associate professor of dermatology at Howard University College of Medicine and president of the Skin of Color Society, and Diane are two of the passionate experts who have partnered with Janssen, a pharmaceutical company focused on innovations for some of the most devastating diseases and complex medical challenges of our time. This initiative, called Determi-Nation, comprises both healthcare and patient experts motivated to spark a health movement within plaque PsO and PsA. Members of this diverse, cross-functional team are all paid consultants for Janssen, and together are working to develop solutions with communities of color – bridging treatment and diagnosis gaps.
Respectively, Diane and Dr. McKinley-Grant reflected on the challenges of living with, and treating people who have, plaque PsO or PsA, and compiled five ways people of color can confidently advocate for their skin health.
1. Choose Providers Familiar with Skin of Color
On Caucasian skin, plaque PsO typically appears as raised, red patches covered with a silvery white buildup of dead skin cells, or “scale.” However, on skin of color, plaques can be thicker with more scales than the surrounding skin and appear darker, less red, and more violet.4,5,6 A diagnostic presentation for psoriasis is the plaques are symmetrical in all skin types.6 Therefore, Dr. McKinley-Grant stresses the importance of looking for healthcare providers experienced with skin of color.
“Find out where the dermatologist trained, if it was a community with people of color and if they have experience in treating psoriasis in patients of color,” Dr. McKinley-Grant says. “Research into the doctor’s background takes more effort in the beginning but may result in finding the best provider for your plaque psoriasis.” Also getting referrals from other patients and reading reviews on the internet are ways to assess the doctor.
2. Prioritize Clear Communication
Dr. McKinley-Grant considers active listening critical in the patient-provider relationship, saying that “clear, engaged communication can go a long way toward better disease management.” She goes on to note, “you should try to be open and honest about what you are experiencing and observe whether your provider is actively listening while you describe your condition.”
3. Listen to Your Body
As someone living with plaque PsO and PsA, Diane found strength in being an expert on her own disease by paying close attention to her body.
“Providers should understand that my life matters, and I deserve a diagnosis,” she says. “I had already versed myself in the limited research that was out there, and I wish I knew then that it’s okay to speak up and take note of what I’m noticing with my body.”
4. Bring Your Support Network
Living with a chronic disease, and implementing these learnings, understandably can seem like an enormous task. This is especially true for people with plaque PsO, who endure considerable challenges due to visible signs of the disease. As a result, they may have anxiety and can become depressed.7,8
Recognizing that this disease can be an uncomfortable subject, Diane has found it helpful to lean on her husband, a trusted member of her support network, during the difficult moments. Having emotional support is invaluable when managing any chronic disease.
5. Utilize Resources
While people ultimately strive for in-person visits to cultivate the doctor-patient relationship, ask about remote ways to access information. Virtual office visits have numerous benefits, including the convenience of sharing your experiences and questions from a comfortable place.9,10
There are also organizations, like the National Psoriasis Foundation, dedicated to supporting people living with these diseases.11
While there is much work to do, Dr. McKinley-Grant, Diane, and the entire Determi-Nation expert team know that the most important step is to simply start the conversation!
For more information on Determi-Nation, visit https://www.jnj.com/health-and-wellness/advocating-for-yourself-at-the-dermatologist.
1 Kerr GS, Qaiyumi S, Richards J, et al. Psoriasis and psoriatic arthritis in African-American patients–the need to measure disease burden. Clin Rheumatol. 2015;34(10):1753-1759.
2 The National Psoriasis Foundation. Treating Skin of Color. Last accessed December 15, 2021. https://www.psoriasis.org/advance/treating-skin-of-color/
3 Aslam T, Mahmood F, Sabanathan A, Waxman R, Helliwell PS. A clinical and radiographic comparison of patients with psoriatic arthritis from different ethnic backgrounds. Rheumatology. 2021 Jan; 60(1):340-345.
4 The National Psoriasis Foundation. Psoriasis Statistics. Last accessed December 15, 2021. https://www.psoriasis.org/psoriasis-statistics/
5 Alexis AF, Blackcloud P. Psoriasis in skin of color: epidemiology, genetics, clinical presentation, and treatment nuances. J Clin Aesthet Dermatol. 2014;7(11):16-24.
6 Skin of Color Society. Psoriasis. Last accessed December 15, 2021. https://skinofcolorsociety.org/patient-dermatology-education/psoriasis/#:~:text=Psoriasis%20is%20a%20common%20chronic,in%20African%20and%20Hispanic%20ethnicities.&text=It%20usually%20presents%20as%20thickened,elbows%2C%20knees%2C%20and%20back
7 Ferreira BI, Abreu JL, Reis JP, Figueiredo AM. Psoriasis and Associated Psychiatric Disorders: A Systematic Review on Etiopathogenesis and Clinical Correlation. J Clin Aesthet Dermatol. 2016;9(6):36-43. PMCID: PMC4928455.
8 Armstrong A, Schupp C, et al. Quality of Life and Work Productivity Impairment among Psoriasis Patients: Findings from the National Psoriasis Foundation Survey Data 2003–2011. PLOS ONE. 2012;7(12):1-6.
9 Gkrouzman E, Wu DD, et al. Telemedicine in Rheumatology at the Advent of the COVID-19 Pandemic. HSSJ. 2020;16(Suppl 1):108–111.
10 The National Psoriasis Foundation. Telemedicine Tears Down Barriers to Your Doctor. Last accessed December 15, 2021. https://www.psoriasis.org/advance/telemedicine-tears-down-barriers-to-your-doctor/
11 The National Psoriasis Foundation. About Psoriasis. Last accessed December 15, 2021. https://www.psoriasis.org/about-psoriasis/