Finding a community, gaining a voice

| Chris Paoli

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.

Connect with your community

Whether you’re looking for advice or wanting to make a new friend, TalkPsoriasis is the perfect place to start a conversation with others who understand what you’re going through. 

 

More from our series of community profiles: 

Editor's note: This story originally appeared in the summer issue of NPF Advance.

Photo: Anna Lynch @andiamo.anna

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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