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.

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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?

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?

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.

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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)