Psoriasis

Raising awareness and taking action for Psoriasis Awareness Month

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August is Psoriasis Action Month, and this month when those living with psoriasis raise awareness about what it’s like living with a condition that is often misunderstood and stigmatized. We asked members of the PatientsLikeMe community to share what they wish others knew about life with psoriasis and psoriatic arthritis, here’s what they said… Like the National Psoriasis Foundation says, psoriasis isn’t contagious, but awareness is! Share your experiences with psoriasis or psoriatic arthritis and learn from others living with the same condition. On PatientsLikeMe there are more than 5,600 members living with psoriasis and more than 2,000 members living with psoriatic arthritis. Log in to PatientsLikeMe now to join the conversation share your experience and learn from others living with the same condition. Share this post on Twitter and help spread the word.

Breaking barriers on World Psoriasis Day

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Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis. This year’s theme is breaking barriers. Psoriasis patients face barriers every day in the healthcare system, at work, in school and social situations. So tomorrow on October 29, the International Federation of Psoriasis Associations (IFPA) is calling on everyone to help psoriasis patients:   FIGHT prejudice, stigmatization and discrimination RAISE awareness, understanding and hope GAIN access to proper diagnosis, treatment and improved quality of life   Here’s how you can get involved: Share IFPA’s animated film – This short video focuses on this year’s theme of breaking barriers – help spread it on social media and share it with friends and family. Join the Thunderclap Campaign – Sign up  and allow Thunderclap to post a message on your social media on October 29 – they’ll be posting at the same time all over the world to speak up for psoriasis with one voice. And if you’re living with psoriasis, connect with more than 5,400 PatientsLikeMe members …

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“I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference

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August is Psoriasis Awareness Month, and we’re kicking things off with a recap from the FDA’s public meeting on psoriasis back in March. The meeting was part of their Patient-Focused Drug Development Series that aims to bring the patient voice to research. Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe notes that, “The most effective part of the meeting was the patient stories. Even though a lot of quantitative data has been gathered by the FDA, they’re learning firsthand how difficult it is for these patients. Having an event that’s so patient-centric – where people are telling their stories and those attending can submit questions through the webinar – really lets patients make their voices be heard.” The PatientsLikeMe psoriasis community also gave feedback through a survey in the weeks before the meeting, and this data was shared with the FDA. Check out the full report of what members had to say. And Dan, one of our community moderators here at PatientsLikeMe, attended as both a member of our staff and a patient. We caught up with him to chat about his experience. Here’s what he had to say: What was it like to attend this event as …

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World Psoriasis Day 2015: Have hope, take action, make a change

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Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis. On October 29, the International Federation of Psoriasis Associations (IFPA), its members associations and support groups perform activities internationally to raise awareness of psoriasis and psoriatic arthritis. Each year, World Psoriasis Day has a theme, and this year’s focus is “Hope. Action. Change.” So how can you get involved and help World Psoriasis Day reach its goals of raising awareness, improving access to treatment, increasing understanding and building unity among the psoriasis community? Join the World Psoriasis Day 2015 campaign: tell others what gives you hope for a better future for people living with psoriasis and psoriatic arthritis on the Wall of Hope. Be a part of the World Psoriasis Day Facebook group: share your story with others. Take part in the conversation: use the hashtags #ihopepso, #iactpso and #ichangepso to share your vision for a better future for people with psoriasis, and what you are doing to help bring about change. Year-round, you …

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Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

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In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances that may be ahead. We’ve reposted his entire interview below so you can learn about his research studies on patients’ adherence to topical treatments. As the founder of DrScore.com, tell us how rating doctors online can improve medical care. Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era. What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy? PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to …

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Getting ready for psoriasis awareness

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Image courtesy of the National Psoriasis Foundation Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe. What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms. The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you. During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with Maria, David and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe. Share this post on …

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A decade of psoriasis awareness

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Today marks the ten-year anniversary of World Psoriasis Day, a day with four goals: raise awareness for the condition, improve access to treatment, increase understanding of known information and build unity among the global psoriasis community. And after ten years of raising awareness, it’s time to step it up a notch. Tomorrow, the International Federation of Psoriasis Associations (IFPA) is going to create a tidal wave of awareness on social media with their “Thunderclap” campaign. Join in here or click the sidebar on the right. When you join the movement, a World Psoriasis Day message will automatically be posted on your Facebook, Twitter or Tumblr account at 12:00pm Central European Time (7:00am on the east coast). You can share your own message with the #psoriasis and #WPD14 hashtags as well. Check out some of our past posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews (with Maria, David and Erica) and what doctors Jerry Bagel and Steve Feldman had to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe – more than 4,800 people are sharing their experiences and stories with each other. Share this post on Twitter and …

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More than skin deep

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  August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition.     Starting with the basics Q: What is Psoriasis? A: Psoriasis is a chronic, genetic autoimmune condition that causes red, scaly patches on the skin that itch, crack and bleed.1 Q: Who is living with psoriasis? A: Over 7 million Americans (equally men and women), and global estimates say 2-3% of the world’s population – as many as 125 million people – has the condition. Dispelling the myths  Q: Can I catch it from someone else? A: It’s NOT contagious! Psoriasis is triggered by a combination of genes inherited from parents and exposure to outside factors such as stress, smoking or infections.2 Q: Is there a cure? A: There is currently no cure, but individualized treatment options are available that reduce inflammation and skin damage.2 Q: Is all psoriasis the same? A: Nope, there are many different forms of psoriasis, which you can learn about by visiting the NPF’s description page. But these questions …

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Uncovering psoriasis with patients like you

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This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who shared their experiences and helped uncover a little more. Here’s a sneak peek: Summer facts What do we know about those who took part this summer? The average age of those who answered this survey was 48, and 70 percent of respondents were women. These people also told us about what activities they prefer. A majority of members enjoy swimming in the summer, and out of the swimmers, more preferred the pool (39%) than the ocean (35%). And when it came to clothing choices, we learned that the majority of you (70%) are actually fine with ‘uncovering’ a little skin, choosing to wear T-shirts and shorts versus long sleeves and pants. You can check out the full results by downloading this report — Patient Voice: Uncovering Psoriasis (Summer 2013). You’ll find in-depth look at how our members with psoriasis rated their “skinpact1” this summer along with …

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World Psoriasis Day – Global access to treatment

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The international community is coming together today to raise awareness about psoriasis, and this year’s theme for World Psoriasis Day is ‘global access to treatment.’  The International Federation of Psoriasis Associations (IFPA) includes almost 50 member associations around world, including the National Psoriasis Foundation (NPF) right here in the U.S. They’re helping to spread the word about this chronic, autoimmune disease that affects more than 125 million people across the globe.[1] So what are the messages we’re all trying to get out there today?   Raise awareness: to let people with psoriasis know that they’re not alone Improve access to treatment: to move it up on the healthcare agenda Increasing understanding: educate people about the condition so that they can discuss it openly Building unity among the psoriasis community: to provide a platform for the patient voice[2] And here at PatientsLikeMe, the psoriasis community isn’t just raising awareness today; they’re doing it every day, all year round. Together, they’re learning to improve their quality of life and are paving the way to better care by sharing their experiences. Check out some of our member interviews that are up on the blog to get a glimpse of what living with psoriasis …

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