Understanding the Patient and Advocate Experience: Psoriatic Disease and Skin of Color

AbbVie's fourth annual "Science of Skin" event took place on August 8, focusing on managing chronic skin conditions through both personal and professional perspectives. The event aimed to educate and empower Americans with skin diseases, highlighting patient control, support networks, and the needs of patients with skin of color.

This year's event, titled "Science of Skin: Empowering Conversations to Take Control of Chronic Skin Disease," featured 3 expert-led sessions, including one by Chesahna Kindred, MD, MBA, FAAD, a board-certified dermatologist, and Brenda Kong-Tunac, a psoriasis and psoriatic arthritis patient and advocate.

Dermatology Times recently spoke with Brenda to discuss her journey with psoriatic disease as a woman with skin of color, including what she hopes to share with clinicians and other individuals with psoriasis and psoriatic arthritis.

Board-certified Dermatologist, Chesahna Kindred, ​MD, MBA, FAAD​, left, and psoriasis patient and community advocate, Brenda Kong-Tunac share their insights during the “Science of Skin: Empowering Conversations to Take Control of Chronic Skin Disease,” media event, presented by AbbVie, Thursday, Aug. 8, 2024 in New York. (Jason DeCrow/AP Content Services for AbbVie)

The Onset and Evolution of Psoriasis

Brenda's journey with psoriasis began in her early adolescence.

“I have been living with psoriasis for over two-thirds of my life,” she shared, explaining that her condition first manifested in her scalp when she was around 12 years old.

Initially, the disease presented as thick, weeping plaques that felt like a "helmet" on her head, leading to significant hair loss.

“Historically, what I have now is actually 60% less than what I used to have with follicle damage,” Brenda noted.

By her early teens, Brenda's psoriasis extended to her joints, marking the onset of psoriatic arthritis. She described the condition’s progression: “It was so bad at one point that I never got a chance to be like that teenager. I needed to be covered up."

Navigating Early Challenges

Brenda’s early experiences with psoriasis were compounded by cultural and language barriers.

“My parents had just immigrated to the country about a decade prior... their English was not as good for medical jargon,” she explained. This linguistic and cultural gap made it difficult for her family to understand and manage her condition effectively.

Her teenage years were marked by a frustrating medical journey. Despite seeking care from a dermatologist, Brenda was often accompanied by a trusted friend who served as a translator. The lack of direct communication and understanding from her health care providers left her feeling isolated and dismissed.

“Even though we were with a great dermatologist... the arthritis continued to get worse,” Brenda recounted.

Crisis and Advocacy

Brenda’s situation took a critical turn in her early twenties when she developed erythrodermic psoriasis, the most severe form of the disease.

“It was jarring... we didn’t know too much about psoriasis at the time,” she said. This experience became a turning point, prompting her to take a more active role in managing her health.

“I needed to learn more about this disease and how I can manage it,” Brenda asserted.

In 2005, Brenda began volunteering with the National Psoriasis Foundation. Her involvement has been instrumental in her personal journey and advocacy.

“In that journey, I was able to really educate myself and learn my triggers, learn how to take care of my health,” she explained. This advocacy work also allowed her to connect with others facing similar challenges, further amplifying her voice in the psoriasis community.

Challenges Faced by Patients with Skin of Color

One of the significant challenges Brenda highlighted along her journey was the lack of representation and tailored care for patients with skin of color.

“When we would get pamphlets... it was hard to find information that accurately reflected my condition,” she noted. Brenda’s skin type often influenced the way her psoriasis manifested and was treated.

“I didn’t understand, because none of my other friends who were patients looked like me,” she said, discussing the discrepancy between her experience and the typical representations of psoriasis.

Brenda also experienced difficulties with light therapy, a common treatment for psoriasis.

“My skin is so sensitive," she explained, indicating a gap in how treatment protocols accommodate different skin types. “It’s little things like that, little missteps,” she added, stressing the need for more individualized care.

Grassroots Advocacy and Peer Support

Brenda’s advocacy extends beyond formal settings into grassroots efforts. She shared a poignant example of helping a young Cambodian woman with psoriasis through a Facebook group.

“There isn’t a word for psoriasis in Cambodian... so we ended up offering to talk to her and her mom about how we’ve treated my skin,” Brenda recounted.

Gaps in Treatment and Future Directions

Brenda identified several gaps in psoriasis treatment and care, particularly for patients with skin of color.

“I wish we had more literature, more in-depth literature about it in various languages,” she said, emphasizing the need for greater representation in research and clinical trials, which can better inform treatment approaches for diverse populations.

She believes that while there have been significant advancements in psoriasis care, there is still work to be done.

“I think we are moving forward in a good direction,” she added, highlighting recent improvements such as increased representation of dermatologists of color and more progressive approaches to treatment.

“There’s going to be a better way,” Brenda asserted.