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.

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.

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we’ve been focusing on psoriasis patient bloggers, starting with Lissa in March and Alisha B. and Jessica in April.

Today, we’d like to introduce you to Joni (girlwithspots), a PatientsLikeMe member who writes a blog called “Just a Girl with Spots.”  How has she found acceptance with this chronic skin condition (which can cause itching, rashes and plaques) as well as the courage to wear a bathing suit?  Check out our interview below.

1.  Tell us about being diagnosed with psoriasis.

My diagnosis at age 15 was frustrating and dramatic. I was already super awkward – tall and lanky with a mouth full of braces – so to me it was the end of the world. The spots seemed to come on overnight and they took control of my skin. I felt self conscious and ugly all of the time. Even the word psoriasis felt ugly to me. I wasn’t comfortable talking about my skin condition to even the closest of friends. My friends and family knew that I had psoriasis, but not any of the emotions and stresses that I felt as a result of it.

At the time of my diagnosis, I didn’t understand why there was no magic pill that I could take and the spots would go away. Though told over and over, I also didn’t fully understand that my lifestyle and choices would help to play a large role in controlling my outbreaks. I played lacrosse and danced on the kickline, so I wouldn’t allow it to stop me from doing the things that I loved. But there were always the extra steps I had to take to cover it up to feel a sense of comfort – always two pairs of dance tights, leggings and long sleeves in the heat, extra make-up, etc. So even though I did the things I wanted, there was always something that held me back from feeling as carefree as a teenage girl should be.

2.  You’ve blogged about finding acceptance with psoriasis.  What are your top tips, and how does blogging play a role?

Not talking about my condition stuck with me until very recently, and it feels amazing to have finally let go of that internal struggle. Growing up with psoriasis was a challenge that I’m glad I had, it’s allowed me to find myself in a way that may not have happened otherwise. Blogging about living with psoriasis has been extremely therapeutic for me and is the reason why my skin is currently under control. It’s allowed me to get to know my skin on a deeper level and pinpoint what is and what isn’t working for me. My skin is always top of mind, but I always felt stressed and emotional about it, which was actually making it worse. Through a daily journal and blogging, my treatment plan is focused and I feel more relaxed than I ever have about my skin.

Psoriasis treatment is so much about trial and error; there are things that work wonders for others and would do absolutely nothing for me. It’s helped me to organize my thoughts and my own personal research to discover the right formula for me. For me, it’s eating fresh and organic foods that are higher anti-inflammatory, it’s exercising 3-4 days a week, using tea tree oil and heavy moisturizing creams and taking several supplements that I’ve found to be beneficial (daily multi-vitamin, omega-3 fish oil, milk thistle, turmeric, biotin, vitamin B-12, acidophilus). But I always find my biggest relief through the sun, so maybe it’s time insurance starts picking up the tab for my tropical vacations!

3.  I see you vacationed in Florida over Memorial Day weekend.  How did you cope with being in a bathing suit and “having spots”?

I had really wanted to find a new bathing suit for the summer that was white with red polka dots, so I could call it my new camouflage. I decided that instead of running from my spots, I needed to own them in my own way! But unfortunately I didn’t find one in time before I left for Florida! But even knowing and deciding that, I still had anxiety about being in a bathing suit. The past few sunny weekends had pretty much cleared up most of my upper body. But the spots on my legs have always been stubborn, so prior to the trip I had been treating them with a steroid ointment. That only left me with red spots and dark bruises, so not much better!

I decided the day before I left to stop stressing about it. I was going to Florida to celebrate the birthday of a close friend and I wanted to focus on enjoying the weekend, not hiding my spots. I posted about it a few days before I left and got several emails from friends with words of only love and support. I know that attitude plays a large role, but I also believe it’s necessary to only surround yourself with people who love you for you. And that doesn’t just go for people with psoriasis, that’s for everyone.

4.  What’s the most helpful thing you’ve learned at PatientsLikeMe?

PatientsLikeMe has shown me that I’m not alone in my struggles and feelings about living with psoriasis. Having the ability to connect with people who understand exactly what I’m going through has reinforced the reasons that I started my blog. People with psoriasis are always there to provide guidance, treatment recommendations, and most importantly, their love and support. If I can help at least one person with my blog, then I’ve done what I set out to accomplish.

Answering frequent questions about my own condition lets me track my progress and allows me to take a hard look at how my skin is reacting from day to day, week to week, month to month. PatientsLikeMe really understands how different conditions can affect your day to day health, but most importantly how it affects your mental well-being. You understand how important a healthy mentality is and the large role it plays in battling any disease or condition.

“I don’t really know too many people around here with psoriasis.   It was hard to relate with somebody.  My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do.  It’s really important to be able to connect with people who truly understand what you’re going through.”

– Psoriasis Patient Lissa

In March, we introduced you to Lissa, a psoriasis patient who had recently started blogging about life with this chronic skin condition.  At that time, she had begun UVB photo therapy treatment for her psoriasis.

Now, several months later, you can see how Lissa is doing after completing her 51st UVB photo therapy session – and how PatientsLikeMe continues to play a role in her wellbeing – in a Skype video interview with our partner Patient Power, a site dedicated to connecting you with the experts on your condition.  That means doctors and patients.

Lissa Conger: Managing Psoriasis and Harnessing the Power of Patient Communities from Patient Power® on Vimeo.

Check out Lissa’s engaging interview with Patient Power founder Andrew Shorr, a leukemia survivor, above.  And stay tuned for more Patient Power videos featuring PatientsLikeMe members – including patients with multiple sclerosis (MS) and cancer.

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

Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade.  An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.

Entitled Psoriasis Girl’s Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results.  If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.

1.  I see you first experienced psoriasis as a teenager.  How have things changed since you were first diagnosed?

You know how teens can be!  It was tough handling the criticism young people subject themselves and each other to.

My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens.  I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship.  I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor.  My stress level is fairly low these days, however the psoriasis remains uncontrollable.

My thinking about psoriasis has certainly changed.  When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life.  I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive!  It’s a struggle but I know I need to stay positive.

2.  Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?

In my blog, I’m just being real, just being myself: someone who is learning to be positive.  I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.

There are many frustrations to having psoriasis, and I’m sure they vary from person to person.  I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques.  But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.

I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking.  I also think it’s important to exercise to fight stress.  As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications.  Other than that, gotta let “the attitude determine the altitude.”

3.  Great to see you updating your profile often. Which profile tools do you find most helpful, and why?

I like the charts.  I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections.  I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed.  I also like the InstantMe tool.  It’s like a status update.

The community aspect is great.  Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.

4.  What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?

I’ve learned that there are other people that have their good days and bad days, just like I do.  They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another.  We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis.  I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.

It’s nice to know there’s a community of real people who truly understand how I feel.  My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt.  I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.

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