Last month, some of our PatientsLikeMe team members journeyed from Boston to New York City for the National Psoriasis Foundation’s Walk to Cure event. Hundreds of people turned out to walk on a very crisp, but sunny day. Jim Murray is on the PatientsLikeMe marketing team and shared his experience with everyone at the office when he got back.

“It was an incredibly inspiring day. One woman told us that she never misses a walk, but it wasn’t always that way. A family member convinced her to attend one of the walks a few years back, even though she was suffering from severe psoriasis and didn’t want to leave the house. She finally decided to go, and said that it brought tears to her eyes to see and connect with others just like her. She hasn’t missed a walk since.

There was another woman who has a 26-year-old son with psoriasis. She said he was too embarrassed and depressed to come with her to the event, but she came anyway, to learn how others cope with the same emotions her son is experiencing.

Everyone who we spoke to said that connecting with others who understood what they were going through positively impacted their lives; that talking to someone who could truly relate was important. We also heard many saying that they wanted to get more involved in the healthcare process by sharing their experiences in research.”

If you’re living with psoriasis, find others just like you in our growing community of almost 4,000 psoriasis patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forum.

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life.

Are you living with both psoriasis and psoriatic arthritis?
Yes, I am living with psoriasis, arthritis and also Crohn’s.

How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age?
I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst was growing up with psoriasis, from a social perspective. It shattered my self-confidence and self-esteem. I haven’t had a girlfriend my entire life.

What impact has living with psoriatic arthritis had on your life?
Well, I’ve basically hit the inflammatory jackpot. The odds were so low that I was destined to develop psoriasis, and from that arthritis, and following that, Crohn’s. Over the past few years, I’ve been on 4 different biologics, each failing to provide me with the promised relief that I crave so badly. I’ve tried many different systemic, biologic, and topical treatments over the years, all without any avail. I’ve been through hell and back and I’ve come out smiling.

About three years ago, my psoriasis and arthritis flared up so badly that I was a prisoner to my bed. I had to pull myself along the floor to even get to the toilet, my arthritis was that bad. I was put on extremely high doses of steroids. I put on a lot of weight due to the steroids and eating tons of junk food, and fell into a deep depression. I lost friends and had to drop out of school because I missed so much. As my conditions started to improve, I couldn’t stop myself from looking in the mirror and recognizing what I’ve just been through. I’d developed extremely strong mental strength. I’d reached the lowest point of my life and come out stronger than ever.

I used that strength to motivate myself to lose the weight I’d gained. I was weighing in at 118kg (260.14lbs). I took up interval training and weight lifting. There were days that my arthritis and psoriasis were so bad, but I used the mental strength I obtained and pushed myself as far as I could. The days that I was feeling the worst I’d make sure I trained double as hard. I started eating clean and I lost 40kg (88.18lbs), as well as gaining muscle. I’ve now taken up bodybuilding. My goal is to prove that anything is possible and to never let your health get in the way of your dreams. I still train 6 days a week. I use my previous and current pain as motivation to push me that extra step. So in some aspects, I’m grateful to have had the opportunity to develop this outlook on life, as I can apply it to every other aspect of my life. I started up my own IT company and I’ve been working really hard to develop it. I’m currently 85-90% covered with psoriasis, and I’ve been using crutches to walk around for the past couple of weeks. I still haven’t given up hope yet.

What’s it been like to connect with other psoriasis and psoriatic arthritis patients on PatientsLikeMe?
It’s been an enriching experience connecting with psoriasis and psoriatic arthritis patients on PatientsLikeMe. I’ve formed friendships that will last a long time. It’s very rare that you find people that share the same pain that you get from suffering with psoriasis and/or arthritis. It’s a great feeling being able to connect with people on an emotional level and really feel that they know what you’re going through, and that they really do understand. My friends and family try to understand what I go through, but they just can’t relate, as they’ve never experienced it for themselves. PatientsLikeMe takes away the “imagination” factor that my friends and family can only provide me with, when they say, “I can only imagine what you’re going through.”

What is one bit of info that no psoriasis or psoriatic arthritis patient should be without?
Every psoriasis and psoriatic arthritis patient needs to know that there is someone out there that is going through exactly what you’re going through. They should know that you’re not alone in this fight. There may be times when you’re cornered, with your back against the wall, but you’ll make it through with strength and hope. It’s not an easy feat by any means. However, life would be boring without a challenge. Try and find someone on PatientsLikeMe that understands what you’re going through. It helps, trust me. It’s a good feeling to know you can fight against your disease with someone else at the same time. They should also keep in mind that there is treatment that will help out there. You just need to be patient enough to find it. I’ve tried 4 biologics, without relief, but I still haven’t given up hope.

The winter months can mean dry air, less sunlight, indoor heating, and heavy clothing – not the best conditions for people living with psoriasis. As part of our continuing seasonal series, we conducted a
survey of our psoriasis community between October and March, receiving responses from over 500 patients.

We asked everything from, “How does the way you dress for winter affect your psoriasis?” to “Does getting the sniffles or the flue impact your condition?” Members in more than 15 countries responded, signaling our survey is really starting to go global!

The average age of those who responded was 45, with 70% women and 30% men. In response to whether or not getting sick had an effect on their psoriasis, most people (40%) said that it had an effect, 33% said it affected their psoriasis “a little”, while 27% said it had no effect.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall 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?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe? 

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!

Teasing. Physical violence. Staring. Social isolation. Name-calling.

Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up.  One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition.  Another recalls receiving notes in her locker informing her that she was not welcome in gym class or study group.  And yet another shares that her classmates spread sexual rumors that her psoriasis was really rug burn and voted her most likely to get pregnant in high school.

These are just a few heart-wrenching examples of the stigma, ignorance and misinformation that often surround psoriasis, which is not contagious. For these members, the bullying they encountered growing up often had a major psychological impact that included hurt feelings, self-consciousness, depression, anger, loneliness and dating difficulties.  Some report that it ultimately made them stronger, however.  Have you been mistreated as a result of your psoriasis?  Share your stories with others who can truly relate in PatientsLikeMe’s growing psoriasis community, which now has over 3,400 members.

Also, find answers and take control of your psoriasis care plan by learning from PatientsLikeMe members’ treatment evaluations and seasonal survey answers as well as our ongoing dermatologist interview series, which delves into investigational psoriasis treatments currently in clinical trials and other psoriasis treatment trends.  Stay tuned to the blog for another dermatologist interview very soon!

A nationally recognized psoriasis expert, Dr. Jerry Bagel, MD, has been an investigator on more than 45 clinical trials seeking new treatments for psoriasis and other skin conditions.  In addition to treating patients at his private dermatology practice in East Windsor, New Jersey, Dr. Bagel serves as Senior Attending Physician at the Princeton University Medical Center and Director of the Psoriasis Treatment Center of Central New Jersey.   He is also a three-term member of the National Psoriasis Foundation’s Medical Advisory Board.  What investigational treatment for psoriasis is he currently studying?  And what does he wish more psoriasis patients knew?  Check out our insightful interview below.

1. What led you to focus your research on psoriasis?

I started studying psoriasis when I was resident at Columbia-Presbyterian in 1982-1985. At that time I would spend six months on in-patient service with 30 hospitalized psoriatic patients who would stay in for treatment for a month.   And I realized the burden of disease – the psychological, emotional and physical impact of this disease on people.

So when I opened up my private practice in 1985, I decided that psoriasis treatment and care of psoriasis patients would be a major part of my professional career and so I started seeing a lot people with psoriasis.  I started doing research in 1992 and then just kept working with pharmaceutical companies and developing our own protocols for research into the treatment of psoriasis, trying to find better treatments, safer treatments, more effective treatments.

2. Tell us about some of your most recent clinical trial findings.

The most recent clinical trial I’m doing as of today is IL-17 receptor antibodies with Amgen that is remarkable, using subcutaneous injections once every other week.   People are getting clear within 2-4 weeks, so it’s really a quite effective treatment.  I mean, obviously we don’t know [everything yet], but so far it’s been good at our facility, and the data I’ve read about it seems to be pretty good.  So I think it could take the treatment of psoriasis to another level in the sense that over half the people will probably clear and probably 85% will have a very effective level of clearing.  So it’s going to take it to another level of clearing given what existed before.

3. Speaking of what existed before, what current treatments are most effective in your experience?

Well, we still use phototherapy, but people have to come in three times a week for about 12 weeks. It works about 75% of the time, but people only stay clear for about six months maybe 75% of the time.  So in the end it only works well for about 50% of the people.  But it’s totally safe, so therefore the benefit ratio is high.  We also do all the biologic agents, like Enbrel and Humira and Stelara, and they’re quite effective treatments.

In fact, Enbrel and Humira are FDA-approved for the treatment of psoriatic arthritis as well – and up to 25% of people with psoriasis have psoriatic arthritis.  So it helps the arthritic component of psoriasis as well.   So we do use the biologics, although sometimes we have to tweak them with some systemic therapies.   Sometimes we use cyclosporine, sometimes we use methotrexate.  But the treatment of psoriasis today is certainly a lot better than it was say 10 years ago.

4. Do you have any dietary recommendations for psoriasis patients?

I think diet helps, but I don’t think diet necessarily clears psoriasis for very many people, if any.  But we know that psoriasis is associated with the metabolic syndrome, and many patients are obese and have diabetes, which are inflammatory triggers.  I think patients that eat a low-inflammatory diet – with more fish like mackerel, salmon or anchovies, and less red meat – tend to be better.  Staying away from fatty foods like animal fats, and eating more vegetable fats like nuts, tends to be helpful.  Also, I do think that weight loss tends to help people with psoriasis.  The other culprit is alcohol.  Alcohol is not good for people with psoriasis.

5. What is something you wish more psoriasis patients knew?

I wish more psoriasis patients knew that there are physicians providing effective care for psoriasis.  For instance, today I had a young woman who was 23 years old.  She came into my office with psoriasis covering about 20% of her body.  She’d been to three dermatologists before me, and two of them told her there was nothing they could do about it, and she should learn to live with it.  So I wish there was more education for people with psoriasis to know there are dermatologists or psoriasis caregivers who are interested in the treatment of psoriasis – and a better way of connecting people with psoriasis with the physicians interested in treating psoriasis.

It’s no secret that being overweight comes with health risks like diabetes, high blood pressure, high cholesterol, stroke and heart attack. After a new study, researchers from Northwestern University School of Medicine in Chicago are closer to adding psoriasis to the list. However, the study did not conclude if psoriasis influences obesity or visa versa. It’s still a bit like asking, ‘What came first, the chicken or the egg?’ Here are the facts of the study:

• 409 children with psoriasis (ages 5-17) from nine countries participated
• Children with psoriasis were twice as likely to be overweight
• Obesity risk for children increased despite their psoriasis being mild or severe

According to Dr. Amy S. Paller, Chair of Dermatology at Northwestern Medicine, “one-third of all psoriasis cases start in childhood.” If there is a metabolic link between the two conditions, having a healthy lifestyle earlier on could prove important to managing not only weight and cardiovascular health, but psoriasis as well.

What are your thoughts on this? Add your voice to the forum thread that your Community Moderator Molly started.  Join the conversation.

You can find the entire text of the study here.

Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor rating and patient feedback website.

What does Dr. Feldman think about what we’re doing at PatientsLikeMe?  And what’s his take on the current challenges for psoriasis patients, as well as the treatment advances that may be ahead?  Find out that and much more in our interview.

1. 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.

2. 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)!

3. 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.

4.  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.

5. 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.

6. 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.

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

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Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall 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). Also, discover how many of our respondents get annual flu shots.

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

On Monday, we recognized World Psoriasis Day on our blog, and today we’d like to dig a little deeper into this lifelong autoimmune condition, which can cause skin lesions on almost any area of the body as well as psoriatic arthritis.

Did you know that there are several types of psoriasis, and that they can have very different presentations?  Here’s a quick primer on the five main forms, none of which are contagious.

Plaque Psoriasis
The most common form involves reddish lesions topped with silvery white scales.

Guttate Psoriasis
A fairly common form marked by dot-like lesions that are small, red and scaly.

Pustular Psoriasis
Involves blister-like lesions and intense scaling, often on the palms and soles.

Inverse Psoriasis
Characterized by very red lesions where the skin folds (e.g. armpits, groin).

Erythrodermic Psoriasis
A rare, painful form marked by red, swollen skin and lots of dead skin shedding.

See photos of each type of psoriasis here.

If you’re living with a form of psoriasis, find others like you in our growing community of nearly 2,500 psoriasis patients. On our Patients page, you can search by type of psoriasis, years since diagnosis, Dermatology Life Quality Index (DLQI) score and more. We also encourage you to add your subtype(s) on your condition history page so that others like you can reach out and connect.

What treatments work best for your particular type – from light therapy to topical corticosteroids like clobetasol?  Trade notes and exchange support with those who can truly relate today.

Today, October 29th, is World Psoriasis Day, sponsored by the International Federation of Psoriasis Associations.  Here in the US, the National Psoriasis Foundation has created a special website – WorldofPsoriasis.com – for the occasion that illustrates the global nature of this chronic autoimmune disease, which affects 125 million people worldwide or nearly three percent of the world’s population.

Now those living with psoriasis and psoriatic arthritis can “get on the map” by adding a clickable pin for their location that shares their personal stories and photos.  The goal is to get psoriasis patients everywhere to proclaim “I have psoriasis” while also learning about others like them around the globe, such as Arvin O. Ravalo from the Phillipines, Saraswati Gautham from Nepal and Dr. Andres Felipe Jiminez Morales from Columbia.

What are the physical and emotional challenges of psoriasis?  Earlier this year, PatientsLikeMe interviewed four members who are blogging about life with psoriasis in order to shed light on this highly visible and often misunderstood disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  Check out our insightful interviews with:

• Lissa of “Psoriasis Girl’s Point of View”
• Alisha of “Being Me in My Own Skin”
• Jessica of “Jessica and Psoriasis”
• Joni of “Just a Girl with Spots”

These four brave ladies are just the tip of the iceberg, however.  2,470+ patients are sharing their experiences with psoriasis at PatientsLikeMe – including how it affects their quality of life and what percentage of their body is affected – while 840+ patients are sharing about their psoriatic arthritis as well.  Get to know our growing psoriasis community and check out the results of our recent psoriasis patient survey about the impact of summer weather.  Also, don’t miss our upcoming blog post about the five different types of psoriasis!

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

Are people with psoriasis more likely to cover up with pants and long sleeves in warm weather?  Or are they okay with “showing some skin” in shorts and tank tops?  This is just one of the things we set out to learn in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

Participants ranged in age from 10 to 80 years old (with an average age of 43), and 68% of them were female.  What did they have to say?  In response to some of our more playful questions, 62% of participants said they are okay with “showing some skin” in the summer, and 32% said that summer made them “happy as a clam.”  Conversely, 14% said it made them “cranky as a crab,” while 54% said it was a little of both.  What might be causing that crankiness?  49% of respondents reported that bug spray was the biggest skin irritant in the summer, with 30% citing sunlight itself and 22% pinpointing sunscreen.

We also asked some important research questions about how psoriasis affects quality of life, including social activities, sports, personal relationships and more.  These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis.  Don’t miss this in-depth look at how our psoriasis patients rate their “skinpact” as well 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).  You’ll also find tips and insights shared by our patients for coping with psoriasis during summer.

Like digging into the data and learning directly from patients?  Check out our previous Patient Voice reports on preparing for life after an organ transplant and getting the most out of inpatient psychiatric therapy.

Want to connect and learn from psoriasis patients like you?

As you know from our recent blog post, August is Psoriasis Awareness Month, and the psoriasis community at PatientsLikeMe has nearly 2,000 members. It’s only fitting that PatientsLikeMe spent last week connecting with others focused on skin health at the American Academy of Dermatology (AAD) Summer Academy Meeting, an annual educational event for dermatology-focused medical professionals. Held at the Hynes Convention Center here in Boston from August 15-19th, the conference hosted over 1,350 healthcare providers and featured more than 140 exhibitors, including PatientsLikeMe.

If you happened to be at the event and ventured by our booth, you would have seen the friendly faces of PatientsLikeMe employees Sally Okun, Lori Scanlon, Chris Fidyk, Marcy Fitz-Randolph and Sebastiaan Foppema, who spent time chatting with dermatologists and giving them information about the 5,000+ patients with a range of skin conditions at PatientsLikeMe. The team received a lot of positive feedback from providers about the site, as well as specific features such as our Doctor Visit Sheet. Sally, who oversees heath data integrity at PatientsLikeMe, even added a new condition, confluent and reticulated papillomatosis (CARP), to the PatientsLikeMe system in real time after speaking with a provider who specializes in that condition..

In the near future, we’ll be revealing results from a new patient survey aimed at uncovering the emotional and physical effects of psoriasis, a chronic autoimmune condition. Keep your eyes out for an in-depth post with those results!