You'd think that having some sort of medical conundrum you'd understand it about as well as the experts can explain. I always find it hilarious, then, when someone asks about my psoriasis and the best way to explain it is through metaphor.
Psoriasis (said: so-RYE-uh-sis) is an auto-immune disorder in which the immune system attacks the body. Simple enough: but then the brave or curious soul will ask "Why?" For that no one has an answer. The best thing I've ever come up with it that my immune system doesn't work the same way a normal person's does; whatever it is that tells your body to stop growing new skin, to stop attacking what's making you sick, or to just relax, doesn't work properly in my system. So, my body is always at war with itself.
I don't get the questions as much as I used to (most people are terrified how I'll take it if they ask) which makes sense as I grow older and the people I surround myself with either know or understand I won't explode at them. But absolutely I love when little kids ask, partly because their parents are horrified and they don't know yet what a social muck they've gotten themselves into, but mostly because little kids just ask then accept. Once they discover they won't get it, they go back to their other eight billion questions.
One of the down-sides to psoriasis, though, is that my immune system doesn't fight things that make me sick as well as other people's. I get everything! If someone two streets down has strep throat, I'll have it next week; if someone has the flu, I'll catch it later today; if you've got a cold, thanks, now so do I. On one hand my system has learned how to get over illnesses quickly and I've got an amazing ability to continue functioning when most people will be curled under their covers praying for relief, on the other I forget what it's like not to have some sort of cold or sniffle.
So what do the experts know about psoriasis? Not a lot... It's genetic, but we don't know how people get it. The immune system functions differently, but we don't know why. There are 5 types of what they call lesions--most normal people call them spots: plaque psoriasis, Guttate (GUH-tate), inverse, pustular, and erythrodermic.
Plaque psoriasis is the most common type. It's described as raised patches of skin with a "silvery-white build up of dead skin"--in essence your skin is raw underneath and dead on top. They can be anywhere, but are most often found on joints--knees, elbows, lower back--and in the scalp. It doesn't sound too bad, like a scab of old skin, but these 'scabs' can crack and bleed, and when you pull them off you take the healthy living layer off with the plaques. Your raw skin is exposed to the elements that it isn't mature enough for--imagine a sunburn on your chapped lips, that's about how it feels.
Guttate is the next most common type of psoriasis. According to the
National Psoriasis Foundation (NPF), 10% of people with psoriasis develop this type of lesion. It starts in childhood or early adulthood and is characterized by small separate red spots on the skin. They're like bright red thumbprints all over your body, usually found on the trunk, but can be anywhere. Guttate psoriasis is usually accompanied by other types of lesions and a breakout can be brought on by anything from an infection to stress. In my experience they aren't as painful--the skin is still flexible and moves, but it will pull as it dries after a shower or swimming.
Inverse psoriasis is commonly found in folds of skin. It looks like a burn--the skin is smooth, red, and shiny--and it is more prone to irritation from rubbing. For the most part it manifests in smaller patches because of the moist environment of skin folds, but like plaque and Guttate psoriasis many people have inverse psoriasis at the same time as other types.
Pustular psoriasis usually looks like white blisters across the skin. In fact, it is made of white pustules (defined as blisters) filled with white blood cell pus and surrounded by red, newly growing skin. Elements of pustular psoriasis cycle through raw patches to scabbing and pustules. The pus is not contagious, though it is uncomfortable to know you've got pus all over your arms and/or legs, and it is not an infection. There are factors that seem to induce a breakout including pregnancy, emotional stress, and ingested medicines.
The last major type of psoriasis is Erythrodermic (eh-REETH-ro-der-mik). It is a more serious type of lesion and if you have an outbreak the NPF advises you contact a doctor immediately as it can be "life threatening". Erythrodermic is a rare type of psoriasis that covers large parts of the body causing inflammation and usually appears in only 3% of the population with psoriasis. People with unstable plaque psoriasis are more likely to have this type of psoriasis--when they say unstable they mean plaques with little or no definition around the edges. Severe pain and itching accompanies Erythrodermic psoriasis.
There are a lot of different treatments for the different kinds of psoriasis and some treatments are more effective for some kinds than others. Treatments include phototherapy or light box, topical medicines, biologics used to keep the immune system from attacking the body, systemics like medicines used to treat psoriatic arthritis, and other treatments. Every type has benefits and drawbacks and some will work for one person while it makes another person worse. There is no one-size-fits-all treatment for this disorder, just as there is no one-size-fits-all version of the disorder.
I just hope the children growing up with psoriasis like I did grow to accept it. I was volunteering in an elementary school and a first grader came up to me one day; she was probably about six and was wearing a long sleeved shirt even though it was a gorgeous day outside--the first I'd worn short sleeves for--and she asked me what I had on my arm. I smiled and told her about it and she pulled back her sleeve to show me a smaller version of my rampant plaque psoriasis. "I have that too!" she said, surprised. I asked her what she does to make it feel better and she didn't really have an answer, just that her mom helped with lotion. I told her some of my treatments and that playing in the sun usually helped me, "That's why I'm wearing short sleeves today." She went off to class after what was probably a two-minute conversation and the next time I saw her she was running around in a t-shirt just like the other kids.
To be able to help anyone understand this is a part of you, just like red hair or brown eyes, was probably one of the best things this disorder has ever given me. You have to be yourself and take care of yourself, ignoring something that's such a huge part of your life--and always will be--is only going to make it all harder. It sounds corny, but I'm glad I got to talk to that little girl and I hope she'll talk to someone else and help them accept it.
Just a thought...
Stephie
