Finding a Community, Gaining a Voice

The National Psoriasis Foundation was created in 1967 by volunteers. For more than 50 years, patients, families, friends, scientists and health care providers have pitched in to help our cause. Volunteering takes many forms, from following us on Facebook to running with Team NPF to sharing your story with the people who represent you at the state and federal levels.

In this series, you’ll meet a crew who, in their own quiet, steady way, have been working hard to help everyone with psoriasis and psoriatic arthritis. Today: the Kumar family.

Anju Kumar didn’t know where to turn after her oldest son, Ashwin, was diagnosed with psoriasis and PsA at age 12. Both felt isolated and powerless. Neither had heard of psoriatic disease.

The San Diego mom says it took time to process the diagnosis and she wondered what her son’s future would hold. “It was hard coming to terms with the fact that there is no cure,” says Anju.

At the same time, Ashwin was becoming disconnected from his peers and frustrated with a disease he felt nobody could relate to.

Anju reached out to NPF about a year into Ashwin’s treatment journey in hopes of tapping into a community who would understand. The Kumars attended an intimate meeting with NPF volunteers and discovered they weren’t alone. “That was a turning point in our lives. We saw others with the disease and it was strong testimony that you can live a normal life with psoriasis.”

The family became heavily involved with NPF, and Ashwin became a youth ambassador. The Kumars have attended a host of local events like meet-ups and fundraised for Team NPF walks and bike rides. They also joined the Western Advocacy Action Network, traveling to Sacramento, California, to fight for better drug options and insurance coverage for people with chronic diseases.

Ashwin, now 17, is on a treatment that has cleared his psoriasis and gotten his PsA under control. His younger brother, Neel, was recently diagnosed with psoriasis and PsA – however, the family feels more prepared to tackle it this time around thanks to their community.

Photo: Anna Lynch @andiamo.anna