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WHO Global report: Bringing psoriasis into the light

Recently, the World Health Organization released a global report on psoriasis that brought it to the forefront of communication, discussing the issues that psoriasis patients deal with on a regular basis. Although the report goes through their findings in detail – discussing how psoriasis patients have a shortened life expectancy, for example - one message is simple throughout the whole report: Better psoriasis treatment is needed, globally.

The WHO is calling out policymakers around the world to make changes and improving access to care for patients with psoriasis. A study highlighted in the report states “many people in the world suffer needlessly from psoriasis due to incorrect or delayed diagnosis, inadequate treatment options and insufficient access to care.” Here at STLI.com, that is a truth some of our writers know all too well.

We wanted to see what our bloggers Melissa and Merritt thought of the WHO report, and get their thoughts on some of the questions raised. We asked our psoriasis bloggers 4 questions… take a look:

Question 1: What does having psoriasis mean to you?

Melissa’s Answer: Psoriasis means constant pain, daily care, and sleepless nights. It means that on some days, my body is covered in thick red scales that crack open and bleed with each step I take. Other days, psoriasis feels like I’ve been lit on fire. Psoriasis means spending hours applying hot compresses and ointments, just to mobilize my skin.

Psoriasis also means courage and compassion. Living with psoriasis has taught me that happiness isn’t found in flawless skin, but I know how sacred health and wellness can be.

Merritt’s Answer: It mostly means I don’t have the clear skin I want. I’ve been told I have nice skin and I take good care of it (which I do!). I wish the same could be said ALL the time. Since this is something I deal with on a daily basis, I am going to keep living a healthy, balanced life and take extra care of my skin, and me.

 

Question 2: Have you dealt with discrimination in the workplace/school/relationships? How do you handle it? 

Melissa: I’ve definitely been discriminated against in school and in the workplace.  A major contributor to public ridicule is simply that people are largely unaware that psoriasis is a common and noncontagious disease. With this in mind, I offer my own unsolicited information to strangers when I notice them staring. I always smile, and with open communication everyone generally feels at ease. Sharing about psoriasis really doesn’t have to be a big deal. Everyone has hardships, and psoriasis happens to be one you can see.

Of course, even with a positive attitude, there will always be those who are unwilling or unable to see past your skin condition. While you cannot predict these adverse reactions, and while they will always be hurtful, it’s still important to give people chance to learn and respond. People will often surprise you with how understanding and compassionate they can be. It’s important to remind yourself that anyone who treats others differently for having psoriasis probably isn’t worth having in your life, whether you have the disease or not.

Merritt: I know I have, but I’ve been lucky enough that it hasn’t been too severe. A few friends/colleagues/acquaintances have asked me ‘What is that’ when they notice my psoriasis, but once I explain, they either drop it or ask a follow-up question or two. I know at that point others have wondered about it, and therefore I may have been indirectly discriminated.  Regardless, I keep an open mind, as I know most people don’t understand what it is.

Question 3: Do you think that psoriasis has become more accepted over the past few years? Why or why not?

Melissa: It seems that psoriasis has become more publically acceptable. I credit widespread advertisements for medications. I think that within the U.S., new medications have helped spread information about psoriasis. People are now learning that psoriasis is a serious internal disease requiring treatment, and is so much more than just a rash.

Merritt: Yes, but it still has a long way to go. It does get some media attention every once in a while when a celeb says they have it (I’m looking at you, Kim Kardashian), but other than that, I don’t think people truly understand what it’s like. Awareness is key – the more that we know about it, the more it will be accepted.

Question 4: How do you triumph over your psoriasis?

Melissa: It’s not always possible to triumph over psoriasis, but it’s always possible to try.  Psoriasis shouldn’t define you, but living with a chronic illness definitely changes your life. To me, psoriasis presents a choice: I can let the disease dictate my actions, or I can summon the strength to live life on my own terms, in spite of the disease. Also, I hope for better days ahead.

Merritt: I try not to let it rule my world. I am not embarrassed anymore when someone asks ‘What is that’? I just tell them about psoriasis so it’s out there and not a huge stigma. I also remind myself that I have support if I need it: Whether it be writing or reaching out to others online. It’s comforting to know that you are not alone.

So what can we gain from reading Melissa and Merritt’s answers, as well as the WHO survey? Discrimination is a big deal, and something our whole community struggles with. As outlined in the report, raising awareness is an effective deterrent against discrimination: “Patients’ organizations must continue advocating for the rights of individuals suffering from psoriasis. They should be involved in raising awareness of psoriasis among the population in collaboration with governments and policy-makers.”

The WHO Report on Psoriasis also outlines, in detail, some of the quality of life challenges and mental health issues commonly associated with psoriasis. Merritt and Melissa also touched upon these issues in their answers above. Do you have any related comments? Share them on the Skin to Live In Facebook Page. 

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