9 posts in the category “Psoriasis”

Breaking barriers on World Psoriasis Day

Posted October 28th, 2016 by

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 in the psoriasis community.

Let’s rally together tomorrow and help break barriers.

 

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

Posted August 2nd, 2016 by

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 someone living with psoriasis?

I have had psoriasis for 23 years. I wasn’t alone, as my sister and brother had very mild symptoms, and my father and his brother had more moderate symptoms. So for me, having the disease itself wasn’t scary from a medical point of view. But I certainly suffered from social stigma as plaques cover all of my legs, arms and much of my torso.

As I learned from meeting my peers at the PFDD psoriasis conference, many psoriasis patients tend to hide their symptoms as best as they can by wearing clothes that conceal it, and by not participating in activities that would expose it to the public. I, too, was very challenged by the fact that my condition was so visible.

I also have ADD and an acquired learning disability (auditory delay due to an early childhood fever), on top of which I experienced a fair amount of trauma, which resulted in PTS.

I think this is probably why my symptoms were so bad since psoriasis is closely linked to stress and mental health. As a teen, I was grasping for coping mechanisms and esteem builders and I found solace and comfort in climbing, swimming, and hiking outdoors. When I started to experience my psoriatic symptoms, I couldn’t imagine giving up these activities. And so, I simply had to endure and explain my disease to everyone. I rarely, if ever, met anyone else who allowed their psoriasis to be as visible, and I felt extremely isolated. Not to mention my peers also had little or no exposure to people living with this condition aside from myself, thus increasing my issues with stigma.

Going to this meeting was amazing; I was surrounded by patients just like me for the very first time.

It felt incredibly rewarding! However, because I’d spent so much effort over the years suppressing my issues with stigma and the discomfort of psoriasis, it was challenging to process the emotions that came flooding back as I listened to the other patients’ experiences. I was almost brought to tears more than once. Not just for my peers and their suffering, but in recognizing a new awareness about my experience.

My peers were all gathered here to advocate and to express their hardships regarding psoriasis, and in the process they demonstrated incredible personal strength in dealing with this condition and speaking up about it. I was really impressed and inspired.

I also realized how strong I had become by managing the symptoms and stigma with little to no peer support for so many years. This in itself was also a very powerful experience; incredibly validating.

What were the most talked about issues at this meeting?

Much of the meeting revolved around two main issues: the pain and discomfort of psoriasis, and the stigma of having a visible and disfiguring illness. But also many interesting aspects of the patient experience were brought up. For example, nearly every African American present as a patient reported disparities in diagnosis. They all reported that their physicians were not aware that African Americans could even have psoriasis, leading to years of medications prescribed for infections they never had, side effects, and feeling that the medical system had completely failed them.

The prominent topic was around the levels of pain and itching that people experience with this disease, but then it migrated to include discussion of the cognitive and emotional toll of the illness. The level of patient suffering was palpable and very powerful, and sent a strong message to the FDA and the community attending.

Some people experienced constant burning feelings, like their skin was on fire. There were descriptions of feeling like their skin was encased in a cast of plaques, stiff, and uncomfortable, as well as sharp pangs of the open cracks and sores, which any movement or itching created. For many the pain was crippling.

There was also a lot of mention of the stigma experiences from patients recalling their experience as young children and adolescents, managing the emotional challenges of growing up combined with having a misunderstood and stigmatizing skin condition.

Psoriasis manifests in flakey white scales on top of fiercely inflamed red skin, which often cracks open and bleeds. Most people that we meet in our daily lives have no idea what psoriasis is, and are often afraid to even ask. This can lead to us being treated like we are infectious. In many ways it’s hard to blame them, the affected areas often look like Hollywood made-up zombies…

We also we leave bits of ourselves everywhere in the form trails or even piles of silvery flakes on chairs, under our desks, all over the house, and the cracked inflamed skin often leaves blood spots on any light colored clothing, bedding, and furniture.

I have always stepped past my shame and used the opportunity to apologize for the gross mess that I leave because it gave me an opportunity to educate people about what I have so hopefully they wouldn’t be scared of me, but many others in the group reported having a really difficult time talking about their illness with others.

Many coping mechanisms were described like avoiding dark clothes where the flakes would be very visible, or avoiding light clothes as they could highlight the blood stains. Many people also talked about always wearing long sleeves and pants, and going so far as closing the cuff’s of their shirts and pants with adhesive tape to prevent the flakes from spilling out everywhere in public.

Everyone also described this constant emotionally taxing vigilance of trying not to itch or scratch our affected skin as it makes more flakes, which is hard because of the overwhelming itchiness and burning pain. To compound this, many patients in the room had psoriatic lesions on their buttocks and genitals. Can you imagine being in work, or class, out shopping and being consumed with trying to manage the urge to stick your hands in your pants and just itch away? A tragic reality that results in shame, distraction, and, in the end, exhaustion.

Then there is the ever-present social stigma risk mitigation; always shaking out your collar, and sweeping flakes off one’s shoulders away so you don’t look like your are a walking trail of dandruffy, diseased skin.

Even when we are surrounded by educated and empathetic people we know or at least project that they are all affected by our appearance and the messes of “bio waste” we leave in our wake, there is this constant knowledge that we are less desirable as friends, lovers, and even just associates and co-workers; as one panelist reported that they felt as though people treated them as if the were a leper. It’s nearly impossible to disassociate our identity from our disease, because everyone sees our disease right in front of them.

There were a lot of reports of absenteeism from things like school, work, and even fun social events like going to the beach; anywhere public where the emotional effort of managing stigmatization 24/7 was simply too much to handle on a day-to-day basis. There were even questions brought up about whether we were more susceptible to STDs. The meeting facilitator at the FDA explained that they had never heard so many patients attribute such levels of emotional and cognitive fatigue, and brain fog/mental exhaustion to psoriasis. She seemed to be recognizing this as a new and disabling symptom. The FDA was listening!

In the end, we heard each other’s voices amplifying the realities to the FDA and the public that psoriasis clearly affects people on very deep levels; the obvious physical pain and itching, as well as the social stigma fears; the internal shaming and awkward external conversations we have with everyone we meet about our bodies and how our bodies corrupt everyone else’s living and work spaces.

I think the prevailing message was this isn’t a painful and uncomfortable skin issue, this illness touches every aspect our lives especially our mental health.

The irony is, like all autoimmune disease, psoriasis is exacerbated by stress, and having psoriasis causes a lot of stress. I don’t think the medical community has ever really quite understood the interplay between these symptoms and conditions.

Did you feel like the meeting was patient-centric and that your voice was being heard?

I really felt that we were heard. Everything in the program was designed to capture the patient’s voice.

They had this amazing system set up: the facilitator or the FDA staff would ask a panelist a question, and, as soon as they received their answer, they would turn to the audience and ask us the same questions in a multiple choice format. The community listening online would respond from their devices, and the patients in the audience all had received small wireless handsets allowing us to provide our experience. They would then project the results on large screens positioned around the room allowing us to analyze the answers in real time, often prompting the FDA staff to ask follow up questions so they could really gain an in depth understanding of the issue at hand.

You attended as both a PatientsLikeMe employee and a psoriasis patient. What was it like to engage in something like this with an organization like the FDA with that kind of dual perspective?

I think this was the most difficult part for me for two reasons. I wanted to make sure that I was an active participant as a psoriatic patient, and I also was trying to network with other patients and providers to let them know about PatientsLikeMe, and capture the experience so that I could relate it to other patients like me who may attend future events. It was certainly challenging to do all three at the same time.

Going to this event and participating as a patient meant so much to me, knowing that I’d be communicating my experience to these senior staff members of the FDA who will be guiding the future of psoriasis therapies. And hearing other people’s stories about their experience really helped me understand more about my own experience. I realized that I had never really fully processed the challenge of having a stigmatizing visible condition. I also realized that I had a strength that I had not recognized — although my psoriasis has been very challenging, I have managed to live a very full life and have been able to manage the emotional toll that psoriasis exerts. I also felt a little absolved: Has my depression and fatigue been partially fueled by my psoriasis? Have I been shaming myself for years for not overcoming these two issues, when they were not moral failings but part of a larger systemic health condition associated with my autoimmune disease?

On the whole, I’m very glad I went to the PFDD conference on psoriasis; it affected me profoundly and I think that the FDA really was listening and absorbing the experience of the psoriasis patient community. I was proud to be there and I was inspired by the strength of my peers. I really thank PatientsLikeMe for providing me with this rare once-in-a-lifetime opportunity.

 

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

Posted October 29th, 2015 by


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?

Year-round, you can connect with others who understand what you’re going through on PatientsLikeMe. There are more than 5,300 PatientsLikeMe members living with psoriasis, and more than 1,600 members living with psoriatic arthritis. You can also check out some of our past posts on psoriasis, including member interviews (Maria, David, and Erica) and physician Q&As (Dr. Jerry Bagel and Dr. Steve Feldman)

Have hope, take action, make a change, together.

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

Posted August 6th, 2015 by

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 permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!

You’ve done extensive research around treatment adherence. What are the considerations for patients?

Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).

If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.

We have a growing psoriasis community. What challenges do psoriasis patients face?

Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.

In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?

Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.

Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?

As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.

If you’re living with psoriasis, don’t forget to connect with the more than 5,000 members of the psoriasis community at PatientsLikeMe.

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Getting ready for psoriasis awareness

Posted July 31st, 2015 by

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 MariaDavid 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.

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A decade of psoriasis awareness

Posted October 28th, 2014 by

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.

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More than skin deep

Posted August 10th, 2014 by

 

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 just start the conversation about psoriasis, and getting involved is a great way to educate others. Unsure where to begin? The NPF has some great activities, including national Walks to Cure Psoriasis and “More Than Skin Deep” informational events. And if you have psoriasis, you can apply for the NPF’s One-on-One program, where people living with the condition mentor those who’ve been newly diagnosed.

Don’t forget to visit the psoriasis community at PatientsLikeMe, too. You’ll see how other members treat their psoriasis, and you’ll be connecting and learning from the people who know what’s its like.

Share this post on twitter and help spread the word for Psoriasis Awareness Month.


1 http://www.biotech-now.org/health/2012/08/august-is-psoriasis-awareness-month-psoriasis-isnt-contagious-but-awareness-is

2 http://www.niams.nih.gov/Health_Info/Psoriasis/psoriasis_ff.asp


Uncovering psoriasis with patients like you

Posted November 1st, 2013 by

World PSO Day

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.

Uncovering Psoriasis

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 what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights? Here’s a recap of the other seasonal reports, made possible by the experiences that PatientsLikeMe members have shared over the past year:

Want to connect and learn from psoriasis patients like you?


1 The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact).

 


World Psoriasis Day – Global access to treatment

Posted October 29th, 2013 by

World PSO Day

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?

 

  1. Raise awareness: to let people with psoriasis know that they’re not alone
  2. Improve access to treatment: to move it up on the healthcare agenda
  3. Increasing understanding: educate people about the condition so that they can discuss it openly
  4. 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 means to them.

Maria – The real me
David – I still haven’t given up hope
Erica – Finding peace and confidence

Raise awareness with one click – just click here and a tweet will go out from your own twitter account saying “Today is World Psoriasis Day and I’m sharing my story with @PsoriasisIFPA and the @patientslikeme #psoriasis community. RT #PLMer.” How easy is that!?

If you’re living with psoriasis, connect and share with more than 4,000 members in our growing psoriasis community. Use the symptom and treatment reports to learn more about your own health, and see how psoriasis affects other peoples’ daily lives, like jumping in swimming pools or going to tanning salons.


[1] http://www.worldpsoriasisday.com/web/page.aspx?sid=8538

[2] http://www.worldpsoriasisday.com/web/page.aspx?refid=10