I have had psoriasis for a majority of my life, but it manifested itself much differently when I was younger.  I thought I was allergic to my laundry detergent, or that I had uber-sensitive skin.  I also just thought I had a mild case of dandruff and used T-gel shampoo.  I switched laundry detergents, started using hypo-allergenic deodorant and making minor lifestyle changes to cope with the minor issues I encountered.  Psoriasis was never brought up by my PCP, who I’d been seeing since age 7.  At age 24, however, and still with the same doctor I’ve had since a child, I had a severe flare up because my doctor put me on prednisone to combat an antibiotic I had to take that gave me a rash.  Anyone with psoriasis knows if you’re put on an oral steroid it makes your psoriasis flare immediately after you stop taking it.  So I went from having two or three patches on my leg to it taking over my body from head to toe in about 6 months.

Psoriasis inhibited my daily life when I had it severely.  It was very traumatic to go from having flawless skin to being covered in “scales” as they’re called.  Having severe psoriasis requires a very drastic change in lifestyle and quality of life.  There have been several studies conducted that equate living with severe psoriasis to living with a terminal illness such as cancer or HIV.  It affects every aspect of your life from the moment you wake up to the moment you go to bed.  It changed my entire personality.  I got incredibly depressed.  My self esteem was non-existent.  I couldn’t wear anything I wanted to wear because I was embarrassed about the way I looked and tired of answering questions from everyone about what was wrong with my skin.  I ruined a lot of my clothes because I would bleed on them all of the time.  It’s something that was always in the forefront of my mind to an obsessive point.  I didn’t want to leave my house, be intimate with my boyfriend, or even get out of bed some mornings because the thought of having to face another day feeling the way I did was too overwhelming.  I would have to spend an hour at the beginning and end of every day applying my medication, going to light therapy three times a week, driving to Cleveland on numerous occasions to visit specialists.  I could speak for hours about every aspect of my life that it affected, but those are the major ones.  You can’t really imagine how uncomfortable and painful psoriasis is unless you have it.  I sometimes tell people to imagine how they feel when they get a really bad sunburn.  It’s itchy, it bleeds, your skin peels off all of the time, and you can’t sleep because you are so uncomfortable 24/7.  I wouldn’t wish psoriasis on my worst enemy.

What do you do to prevent flare ups?

The scary part about having psoriasis is its unpredictable nature.  You can be completely clear one day and wake up the next with patches on your body.  Psoriasis has certain triggers, which are different for everyone, but they’re generally related to stress and lifestyle choices.  If you live a healthy lifestyle and manage your stress well, psoriasis is usually manageable.  There is no foolproof way to prevent psoriasis from flaring up, though, which is why I never take the fact that I have clear skin right now for granted.

I got involved with the National Psoriasis Foundation after attending a “More Than Skin Deep” educational session the foundation holds once a year in cities across the country.  Someone got up and spoke about the Pittsburgh support group and I started attending meetings a few months later.  Becoming involved with the foundation has helped me to regain control of my disease and connect with others who have been through what I’ve been through.  It has been a rewarding and fulfilling experience.

In addition to planning the 2nd annual Pittsburgh “Walk to Cure Psoriasis”, I am also a volunteer mentor for the foundation’s One2One program.  I have also been to DC twice to lobby for the psoriasis bill we currently have in legislation, and successfully acquired my representative in the House, Mike Doyle, as a co-sponsor of the bill in both 2011 and 2012.  The bill secures funding for data collection and a patient registry crucial to connecting public and private data and research conducted on psoriasis.  Currently, the CDC (Center for Disease Control) and NIH (National Institute of Health) collect no public data on psoriasis.  We hope to give the disease the attention it deserves from the medical community so that it’s treated as a serious autoimmune condition associated with many co-morbiditites such as higher risks for heart disease, diabetes and many other life-threatening conditions.  Psoriasis can form within arteries and other areas of the body just like it does on the skin.  It is an inflammatory condition and should be treated as such.  Generally, family doctors and those unfamiliar with the disease do not know enough about it to treat it or diagnose it, which results in a huge need for this community of patients.  It is estimated that about 7.5 million people in the US alone have the disease, which makes it the most widespread chronic autoimmune disease in the country.  About 3% of the population worldwide has it, yet so little is known about it.  This is why I do the work I do.  There is no reason this should be.  This isn’t some rare disorder, it’s psoriasis.  It’s just such a shame that so many people have to suffer alone without any access to care or even someone who knows what they’re going through.

What inspired the Cut-a-Thon concept?

The Cut-a-Thon came to mind because a lot of people with psoriasis don’t have it severely.  Most mild cases appear on the scalp, and people look at it as a minor inconvenience or cosmetic flaw.  It does cause a lot of embarrassment when it comes time to go to the hair salon, though, and many people avoid salons and getting their hair cut as a result.  I wanted to do the Cut-a-Thon as a way to not only raise money and awareness for the cause and the foundation, but as a safe haven for those with psoriasis.  They can come to the best hair salon downtown pittsburgh could offer, Verve Wellness, to get their hair done without feeling ashamed or embarrassed.  I also thought the Cut-a-Thon would be easier for the average psoriasis patient to relate to because more people have scalp psoriasis than those who have it severely.

Posted in Events by Sweet1lani / August 29th, 2011 / No Comments »