Why speaking up about psoriatic disease matters

| Noe Baker

Noelia Ferreyra’s always been outspoken about her psoriasis and psoriatic arthritis. The 29-year-old San Diego resident was diagnosed with psoriasis at 13 and psoriatic arthritis at age 24. Sharing her story is important, she said, to make powerful connections with others.

And make powerful connections she does. Ferreyra and other National Psoriasis Foundation volunteers joined advocates from the Arthritis Foundation and the California Rheumatology Alliance for California Lobby Day in late April. The group of patients, families and health care providers used their stories to gain support for legislation that would improve the lives of Californians with chronic diseases and make treatments more accessible.

“The coolest part is hearing other people’s stories and talking to the lawmakers themselves,” Ferreyra said.  

By sharing their experiences about life with psoriatic disease and the struggles to access the medication they need, the group made strong relationships with each other and their elected officials.

Ferreyra  finds when talking to lawmakers that they often have a personal connection to psoriatic disease or they end up “teaching you more than you teach them.”

“It all goes back to the stories, even the lawmakers’ stories,” Ferreyra said. “Everyone has their own stories.”

That was the case for Sen. Jeff Stone, who represents California’s 28th district in Southern California.

 A pharmacist by training, Stone connected on a personal level with the group when he told them about his friend with psoriasis. The senator revealed that he makes a special coal tar shampoo for his friend’s psoriasis.

“That was a highlight for me,” Ferreyra said. “I left feeling very empowered.”

Need better access to psoriatic disease treatments

In addition to California Lobby Day, Ferreyra has participated in two of the Psoriasis Foundation’s Capitol Hill fly-in events in Washington, D.C. Through these events, she’s learned the power of people working together for a common cause. 

 “We need to pass more things in our own states. We have a lot of impact locally,” she said. “I don’t have to go to Sacramento to meet my lawmakers. I can make an appointment, or call and email them from my home.”

Events like California Lobby Day also help constituents feel more connected to their elected officials. “A lot of times people view them as far away. It’s important to show that you have access to them, and that they’re real people like you and me,” she said.

The National Psoriasis Foundation plans to host at least three state lobby days in the next year. Want to make an impact in your state? Join us.

Ferreyra’s advice for advocating for people with psoriatic disease? Don’t be nervous or scared.

“It goes back to sharing your story. It’s more powerful than anything,” she said. “These people were put in office to hear our stories and how these laws impact us. When you share your story, you make a connection. And it affects the outcomes.”

Make a difference with us. Share your story.

 

 

 

 

    


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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