How 125 million people deal with psoriatic disease

| Kathryn Jones

The rainy climate of the United Kingdom doesn’t provide for ideal beach weather, but Zara Klokkou said that works in her favor — it provides an excuse to hide under layers of clothes and avoid curious looks.

“As the U.K. doesn’t have weather on its side, people find it easy to cover up. I even do this in summer, as I find it embarrassing when people look and stare,” said Klokkou, 26, of Kent. “It can affect the things I want to do, which is a shame, and I miss out because of it. It would be nice to have psoriasis more known in the U.K. so people would be less judgmental.”

Since being diagnosed at age 15, psoriasis has impacted Klokkou’s confidence — not to mention her wardrobe — ultimately affecting how, where and when she goes out in public. However, it’s a different scenario in Spain, where she travels in winter when cooler weather provokes her psoriasis flares. Warmer temperatures — combined with warmer reactions from the people there — make her more comfortable showing her skin.

“The Spanish are more sympathetic and seem to know the condition. They like to help by telling you about natural remedies like vinegar, lemon and sulphur baths. Maybe they are more educated, as people generally have their arms and legs on show for people to notice, but I feel more at ease in Spain in a short-sleeved T-shirt than I would at home in the U.K.” 

Zara Klokkou

Psoriatic disease affects men and women of all ages and all ethnicities, so no two cases are identical. From stigmas and discrimination to the cost and accessibility of care, each patient’s surrounding society can influence his or her quality of life as much as the condition itself does.

The widespread prevalence of psoriasis is a global concern. Out of the more than 7 billion individuals who populate the Earth, more than 125 million of them are living with psoriatic disease, according to the International Federation of Psoriasis Associations. That's why IFPA, with help from the National Psoriasis Foundation (see this story on NPF volunteer Kathleen Gallant), embarked on a multi-year-long advocacy campaign to convince the World Health Organization (WHO) to adopt a resolution outlining the need for action on the disease. 

In 2014, the 67th World Health Assembly adopted a resolution that recognized psoriasis as a serious noncommunicable disease and “highlighted that many people in the world suffer needlessly from psoriasis due to incorrect or delayed diagnosis, inadequate treatment options and insufficient access to care, and because of social stigmatization. The resolution prompted WHO to release a global report on psoriasis this year to draw attention and create public awareness.

“Two things struck me most in the WHO global report on psoriasis,” said Dr. Belinda Loring, technical officer for the Management of Noncommunicable Diseases at WHO Headquarters in Geneva, Switzerland, and one of the co-authors of the report.

“First was the huge impact that psoriasis can have on people’s lives, in the areas that are most important to us — our relationships, our work, our ability to participate confidently in society and how we feel about ourselves," Loring said. "We hope the WHO report can help correct the false perception that psoriasis is ‘just a skin condition.’”

The second thing that struck her was how few countries have data on the prevalence of psoriasis or psoriatic arthritis. “This means that, in most countries, psoriasis is not being measured, and it is likely an invisible problem,” Loring said. “There’s a saying that ‘what gets measured, gets done,’ so better data on psoriasis is critical.”

Dr. Belinda Loring

Given the lack of statistics, stories from those living with the condition are the best way to illustrate the global impact of psoriasis and psoriatic arthritis. We know the wounds of psoriatic disease are the same in every country, but what about the emotional scars? Do people experience the same embarrassment and heartbreak, whether it's coping with bullies at school, answering rude questions from strangers or explaining to a potential mate that psoriasis is not contagious? 

To put the WHO report into context and better understand how variable costs, treatment options and stigmas vary across cultures, we turned to our online support community, TalkPsoriasis, for help. We asked our more than 90,000 international members if anyone outside the U.S. would be interested in chatting. To our surprise, we heard back from people living on every inhabitable continent who were eager to tell their stories.

With so much valuable information to share, we decided to break this series into four sections. Part II will discuss the various cultural stigmas of psoriatic disease. To be specific, we take a look at the similarities and differences in how adults and children are treated by peers in their respective countries. Part III covers what we call "access to care" issues, which includes access to treatments, drug costs and insurance barriers.    

But we didn't stop there. Have you ever wondered how doctors in other countries treat psoriatic disease? For a global perspective on what it means to treat psoriasis and psoriatic arthritis, we gathered a panel of dermatology and rheumatology experts from across Europe, Asia and South America to learn more about the similarities and differences in treatments, costs of care and doctor-patient relationships. We'll share what we learned in Part IV of the series. 

It's natural to feel alone when you're battling a chronic disease. We routinely get wrapped up in our own little worlds and forget that we're part of a much bigger picture. But remember, there are 125 million people in the world fighting the same war against their immune systems. So the next time you feel alone, don't forget that there are people of all ages, from all walks of life, from all over the world who are Psoriatic Psuperheroes just like you, and together we will persevere. 

The purpose of this series is to allow our readers to learn about these individuals’ stories to compare important issues such as cultural stigma, access to care and treatments. The views expressed by these individuals are their own and do not necessarily represent the views of the National Psoriasis Foundation.

Treat your psoriasis seriously

World Psoriasis Day is Monday, Oct. 29. This year, as we stand together across the globe, we're asking you to treat your psoriasis seriously. How does your disease affect your health? Begin by taking this simple assessment. No matter where you live, we can help.

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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