In honor of World Psoriasis Day, an annual awareness day dedicated to the 125 million people around the world living with psoriasis, the National Psoriasis Foundation (NPF) is sharing stories from those who live outside of the United States.
Although NPF is a U.S.-based patient advocacy organization, we serve people from all over the world – from neighboring countries like Canada to faraway places like Algeria, Nepal and Mauritius. Since opening in February 2016, our Patient Navigation Center has served 1,325 people from more than 70 countries outside the U.S. Each day, we hear from people who may live in different communities, but are all looking for the same thing: comprehensive information and compassionate guidance.
Providing emotional support in Italy
Rebecca Marcati, who lives in Italy, first reached out to the Patient Navigation Center in September 2016 to participate in a one-on-one goal setting session. Marcati, who describes herself “as a sport-loving girl,” had been suffering from intense psoriatic arthritis (PsA) pain and wanted help managing her painful symptoms and stress associated with her disease.
“When I was diagnosed with my disease, I felt overwhelmed, as if my life had been destroyed,” she said. “For months, I tried to cope, but after a while I realized that I couldn’t do it by myself. I felt alone and desperate, without anyone able to understand me. So, I searched the internet to see if there were any groups that could help me and give me some support.”
Marcati was matched with Patient Navigator Sara Conyers, who not only provided information about psoriatic arthritis, she also helped her find techniques to manage her stress and ways to exercise with PsA. Conyers also encouraged Marcati to join the One to One program so that she could talk to someone else living with PsA.
“At first, I was afraid I couldn’t participate [in One to One] because of the language [barrier],” said Marcati. “But I was so lucky to find my mentor, who was perfect for me and could really understand what I was going through. Everyone suffering from this disease has to fight on the front line, so having the support of someone who can understand what you’re feeling, both physically and emotionally, helps you feel less alone.”
Now, more than a year later, Marcati and Conyers still email each other. When Marcati’s rheumatologist wanted to switch her to a different biologic treatment earlier in the year, Conyers provided her with information about the new treatment so she was prepared for her appointment. And when Marcati experienced relief from the new treatment, she emailed Conyers to tell her the good news.
“Sara really helped me from an emotional point of view,” said Marcati. “Although we’ve only communicated through email, I always feel like she cares about me and wants me to feel my best.”
Helping a caregiver in Canada
In addition to supporting our international constituents who live with psoriatic disease, we also help those who care for these individuals.
Kiren K., who lives in Canada, contacted the Patient Navigation Center in December 2016 on behalf of her partner, who was struggling with moderate to severe psoriasis. “It was affecting his self-esteem, his outlook on life, his motivation and our relationship,” she remembered. “I decided to seek help for myself and also for him in hopes of possibly learning about resources or treatments that he had not yet tried.”
Like Marcati, Kiren was also matched with Conyers, who shared information about phototherapy and helped Kiren find a new dermatologist who specializes in psoriasis. After seeing this dermatologist, Kiren’s partner began a biologic treatment, in addition to phototherapy, and results have been promising.
“Since we reached out to NPF’s Patient Navigation Center, my partner started seeing a new dermatologist and he started a new medication, which has provided so much relief,” said Kiren. “We can't believe how much his skin has cleared up in the last month. He feels happier and is enjoying life more. I'm happy seeing him smile again.”
Now, almost a year later, Kiren is grateful for the support she’s received and encourages those who care for someone living with psoriatic disease to contact the Patient Navigation Center.
“Don't give up and reach out!” Kiren tells other caregivers. “It’s worth it. The support and encouragement we’ve received from NPF’s Patient Navigation Center has been so helpful to us. They helped me understand how psoriasis affects someone who has it.”
Messages of support from Pakistan
Patient Navigation Center services span all corners of the globe, including countries like India, Pakistan, the Philippines and South Africa – which represent four of the eight countries with the highest number of patients helped.
Zahir Khan, who has psoriasis, lives in Pakistan and has been using the Patient Navigation Center since August 2016. He loves to participate in psoriasis awareness activities and comes to his Patient Navigator, Amy Kurtz, whenever he has questions about his psoriasis.
“The navigators are very sincere people,” he said. He urges all people with psoriasis, no matter where they live, to contact the program. “The help I’ve received gives me hope….Do not lose strength and courage.”
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! 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 funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.