Psoriasis is not a disease. Really?

It's Dark in the Ozarks

I've recently become hooked on "Ozark," a dark Netflix series drama. Despite my usually avoiding any television that showcases killings and people being cruel to others, the storyline, character development, and plot twists and turns are interesting enough for me to turn a blind eye to the gore. I think what I find hardest is to see how people treat others, all in the name of money. Some of the scenes are hard to watch. I must mention it's nothing nearly as disturbing as the opening 20 minutes of Zero Dark Thirty, where we witness an American CIA agent torturing a suspected 9/11 conspirator, including waterboarding as a method of torture! My God, I could not continue watching that movie. Years ago, I decided I would not take in content that depicted humans hurting other humans, but let's face it, it's hard to find anything to watch that doesn't involve some form of devious harmful activity being depicted, even if it's done without physical violence. So I make exceptions from time to time.

Psoriasis can ruin lives

I've gotten sidetracked a little here, so back to "Ozark"! In the story, the family's teenage daughter mentions in passing that she wants to help raise funds for a friend of hers who suffers from Psoriasis. $10, to be exact. Her father, Marty Byrde, portrayed by Jason Bateman, declines to give his daughter the $10, saying "Psoriasis is not a real disease," that it's just "itchy skin." As someone who has been suffering from it since the age of 11 and whose life has been permanently affected by it and its kissin' cousin Psoriatic Arthritis, it's hard to hear these sorts of comments being embedded into what are otherwise very intelligent scripts that are usually well researched. The fact is, Psoriasis is a real autoimmune disease and can be as innocuous as just a patch or two of red dry, flaky skin on any random part of the body or as devastating as to cover 90% of the body with large or small scaly, red patches of skin that flake and constantly split - even the scalp can be completely covered as was the case for me when I was in high school. Some people even develop infections because the patches split and bleed, opening them up to bacteria. Millions of people, including many celebrities, namely Cyndi Lauper and golfer Phil Mickelson, have Psoriasis and or Psoriatic Arthritis, as I do. Psoriasis can also affect the fingernails and toenails. It basically manifests itself under the nail, pushing the nail away from where it normally is attached, creating unsightly pitted and yellowed nails that look diseased. The nails thicken from scales building up beneath them, rendering them hard to trim. They often get caught in clothing, pockets, bed sheets, etc. Pain in the fingertips is also quite common. Living with Psoriasis is far more life-affecting than just "itchy dry skin." The ramifications are real, and the suffering is real. It's visually unappealing, which makes for feelings of shame and contributes to low self-esteem, especially if stricken as a teenager. It is a 24/7 "maintenance" job that involves creams, lotions, balms, salves, shampoos (many of which smell like tar), and special combs to remove what looks like dandruff. It's a daily nightmare. But times have changed, and there now exist fantastic new drug therapies that make all of the previously mentioned maintenance programs unnecessary.

Wonder Drugs

With all the powerful ads for biologic drugs, which are now more prevalent than ever in treating these illnesses and many others, one would think that a more educated understanding of it had become part of the current culture - but apparently not. Unfortunately, this kind of misinformation, as was presented in Ozark, manages to squeak through, potentially convincing millions of people that a disease like Psoriasis is trivial and should not be taken seriously or even considered a disease. Surely, you've seen one of these drug companies' commercials targeted specifically at Psoriasis and PsA? Drugs like the one shown below:

Cimzia®, Cosentyx®, Enbrel®, Humira®, Ilumya™, Remicade®, Siliq1™, Simponi®, Skyrizi™, Stelara®, Taltz®, and Tremfya™

The true impact Psoriasis can have

What if I told you I had used all but 4 of the drugs mentioned above to treat my PsA (Psoriatic Arthritis)? Would you be surprised? These medications clear up the skin and control the damaging effects of inflammatory arthritis. They act by modulating the immune system and are extremely effective, some more than others. I have had to switch from one to another because, over time, the body sometimes builds new immunity and renders the drug ineffective. These drugs have added years to my life, and had they been around when I was first diagnosed in 1992, I probably would have been able to live in remission and not suffer all the disfiguring joint and organ damage I have. (Psoriasis and PsA can affect organs such as the kidneys and the liver as well as potentially create many other comorbidities such as (I have the ones marked with an Asterix):

Cardiovascular Disease*

Metabolic Syndrome*

Obesity

Hypertension*

Dyslipidemia

Diabetes

Anxiety and Depression*

Inflammatory Bowel Disease

Cancer

Kidney Disease*

Sleep Apnea*

Chronic Obstructive Pulmonary Disease (COPD)

Uveitis

Hepatic (liver) Disease

It was just an innocent comment

So, what to do about Marty's comments from Ozark? I wonder how many cast members, as well as the hundreds and hundreds of people who worked on the series, would agree with Marty? One million Canadians are affected by Psoriasis, and about 125 million (2-3%) of the world's population has Psoriasis. An estimated 30 percent of people with Psoriasis develop PsA. That is not a small number. That means roughly a handful of folks working on the Netflix series may have Psoriasis and or PsA. The only way to beat back misinformation is to take a stand when you hear it or read it. Don't get me wrong. I'm not a vigilante on some sort of crusade to make sure everyone knows about Psoriasis and PsA. However, I started this blog to shed light on invisible autoimmune diseases (even though Psoriasis is visible, it can sometimes be hidden or, as it did for me, manifest as Arthritis which is invisible) with the hope of educating as many people as I can, which is why I am writing about this seemingly insignificant comment. Sometimes these comments unknowingly hurt people and keep the masses in the dark about the reality of living with degenerative autoimmune diseases. Speaking of words that hurt, I stumbled upon this list of 18 comments that "actually hurt people with chronic pain" and thought I'd share it. I've heard some of these personally - it's hard not to bite your tongue.

Anyhow, although my audience is relatively small - just a few hundred followers - sometimes things have a way of making their way around the internet and spreading, just like Psoriasis does across a vacant lot of normal healthy skin, and reach the very people that uttered the words, "Psoriasis isn't a disease."

We need to turn things around and change minds and hearts, so Cyndi, as a fellow Psoriasis sufferer, take it away with your catchy pop tune "Change of Heart!” Please feel free to forward this chapter to anyone with Psoriasis or PsA.