Psoriasis, and other long-lasting skin diseases like it, are terrible. Absolutely, positively terrible. It can strike at any moment in your life, and there are no (known) concrete, universal cures.
Imagine living 25 years of your life with perfectly normal skin, maybe a blemish here and there but overall relatively normal, and then all of a sudden – BOOM. You wake up one day and find red painful patches of dry skin all over your body, visible not only to you, but to everyone around you as well.
Dealing with the physical and mental pressures brought on by an autoimmune disease like psoriasis can be incredibly tolling, affecting what you do, what you wear, how you date, how you act in public, etc., and that is exactly why it's important to surround yourself with people who can relate to your situation and lend helpful advice.
For a disease missing a concrete cure, a support group can be the next best thing. Below is a list 14 quality channels, in no particular order, consisting of young people, old people, women, men, newly diagnosed, veteran patients, comedians, reverends, doctors, fashion designers, non-profit organizations, global medical institutions, and just overall normal people like you or me living with psoriasis, all with their own unique perspectives and suggestions. Have a peak:
“My hope for this blog is to spread awareness of what psoriasis is and that it is not “just a skin condition.” It’s not only about vanity; there are mental and physical challenges that we must overcome daily associated with our disease. I want to share my trials and triumphs, tips and tricks of my experiences living with psoriasis. For me, it’s more than just medicine & prescriptions, it’s all about my overall wellness & health. I prefer a holistic approach to my treatments, but have experience using different topicals, light therapy and biologics with some successes and some failures. Living with psoriasis is a constant reminder to take care of my body, starting from the inside.
“The National Psoriasis Foundation (NPF) is a non-profit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected. Founded in 1966 from a tiny classified ad in a Portland, Ore. newspaper, the Psoriasis Foundation has evolved to become the leading patient advocacy group for the more than 8 million Americans living with psoriasis and psoriatic arthritis. As emerging research continues to demonstrate the serious, systemic effects of these chronic autoimmune diseases, our highest priority is to find a cure.”
“Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who've gone before them. Where researchers learn more about what's working, what's not, and where the gaps are, so that they can develop new and better treatments. It's already happening at PatientsLikeMe. We're a free website where people can share their health data to track their progress, help others, and change medicine for good.”
“Rev. Howard Chang has lived with severe psoriasis and eczema for more than 35 years, since childhood. In addition to actively blogging and tweeting about skin-related concerns, he volunteers for the National Psoriasis Foundation in the Northern California Division.”
“Avascular Necrosis (AVN) of the Knee, Psoriatic Arthritis, Complex Regional Pain Syndrome (RSD), Prothrombin Thrombophilia, Depression, Anxiety, Melanoma in Situ.... I do not and will not let these diagnoses define me. This took me awhile to grasp, and I’m still working to hold on to this through every day. I decided from the second I had the ‘aha’ moment I would not let myself surrender over to anything with a ‘chronic’ diagnosis…. My intention is to help those going through similar situations and to bring hope and inspiration. If my blog can help touch one person’s life out there then my mission will be complete!!”
“Here there will be no doctors, nurses or pharmaceutical companies. It is for people, like me, who suffer from the condition, our families and our friends to help understand what Psoriasis does to us, not just what it looks like.”
“My name is Todd Bello and I was diagnosed with psoriasis at the age of 28. Unfortunately psoriasis is a chronic autoimmune disease and there is no cure…. Since then I did a lot of research. I’ve tried so many treatments: double-blind studies, light therapy, herbal medicines, diets, etc. I turned 50 this year and I’m still determined to find a cure.”
“I’m Sarah. I live in Minneapolis, MN. I’m not a medical professional, obviously. But I have had visible guttate and plaque psoriasis since I was 5 years old, so I’ve spent over 20 years of my life worrying about, caring about, and educating myself about my skin. I’ve never met anyone my age who has psoriasis, and only a few older adults. I know you guys are out there! I hope we can all make a space together for kvetching, commiserating, and informing each other about the disease we all have in common (and its specific variations, too) in order to make living with it just a little bit easier.”
“My name is Lori-Ann. I am married, work in Manhattan, and live nearby in Jersey City. I was diagnosed with psoriasis and psoriatic arthritis in 2012. Although it can be tough to stay active and enjoy life during a flare, or any other day, I believe the city life is the best environment for me…. I am not a health professional of any kind and do not offer any advice on my blog, merely my own experience with treatments and lifestyle changes.”
“I [Brittany Ineson] don’t care how long you have Psoriasis, you never get used to the stares. You never get used to the moving of seats on the train just to get away from you. You never get used to the questions. Try not to slide your sleeves down to make people feel comfortable, or sit by yourself on the train away from everyone intentionally. If someone has an issue with your skin, let them ask you about it. You’ll be surprised how many people will sigh when you say, “it’s just psoriasis. it’s not contagious.”
“I [Sabrina Dreyer Skiles] have a classic, sophisticated yet down-to-earth style and I want to bring daily fashion inspirations to you. I’m also a health and nutrition consultant with simple tips on how to eat better on a daily basis. I am a volunteer mentor and coach for the National Psoriasis Foundation, living with psoriasis for over 12 years, providing guidance to those newly diagnosed.”
“I have lived with psoriasis since about 1985, so I have a long personal experience with the condition. The purpose of this blog is to pass on some of that experience, the successes and the setbacks, in my self-treatment of this condition.”
“Hiding her psoriasis for over 20 years, she finally found the courage to share her story after attending the 2011 NPF Conference in Washington D.C. There she had the privilege of speaking with Members of Congress to advocate health legislation for psoriasis research. Feeling empowered to educate people on psoriasis, she continues to strive and advocate for a cure as well as teaching others about the disease.”
“For those who have stumbled here by mistake, allow me to introduce myself, I am Toby, I am an actor and comedian, and I have suffered from psoriasis for the past 26 years. I am one of the 4%, and these are my experiences. They will take the form of an on-going commentary on my treatment mixed with memories from the past and no small amount of trite wordplay.”
While the channels listed above are certainly among the leaders in the psoriasis and long-lasting skin disease treatment community, they are certainly not all of them. If you have found something to be effective in treating psoriasis, or know of someone worth a spot in the list above, drop a line in the comments below! You may just help someone out.