Thank you to International Federation of Psoriasis Associations for the banner above.
It’s World Psoriasis Day! Let’s celebrate how far we’ve come with spreading awareness, engaging in promising research, and supporting advocacy for a cure.
As a psoriasis and psoriatic arthritis patient, as well as a mother of a child with psoriatic disease, I’ve been surrounded by red, itchy patches and sore joints for many years. Staying hopeful is easier on some days than others. Some days, I feel hopeless, like the disease has just delivered a strong blow — especially when your only boy is rushed to the emergency room during an infusion for his juvenile psoriatic arthritis, when you can’t see his bright smile because his jaw hurts too much, or when you see him vomiting every weekend due to methotrexate side effects.
Some days, I just wish I could throw myself down on the floor, kicking and screaming in full tantrum, until I get my way — a world free of psoriatic pain and inflammation.
But if a full-on tantrum was all it took, then we would have a found a cure decades ago. Sadly, a cure is going to take more — much more. It will take more hope, more action, more change.
Spread Hope
Connect with others so they don’t feel alone. Sometimes a hug — even virtual ones — can make all the difference to another psoriasis patient who is newly diagnosed, starting new treatment, or struggling to make it through the day.
Follow the lead of Jennifer Spear who has started the Michigan Psoriatic Network, a support group in Michigan that aims to connect people across the state to share stories, laughs, and foster progress. The group’s first meeting is at 7 pm tonight (Oct. 29, 2015) at Uptown Grille in Commerce Township, Michigan. Contact Jennifer for more information about the support group, to get information about this event, or to receive information about future get-togethers: Email or connect on Facebook.
The National Psoriasis Foundation (NPF) is holding a Twitter chat today from 1-2 pm with the National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Heart, Lung and Blood Institute; and the American Academy of Dermatology. After all, psoriasis may show on your skin, but it is more than skin deep, and inflammation is often present in many other areas of our bodies. Follow NPF on Twitter (@NPF) and use #PsoriasisChat to contribute to the conversation.
When you’re done with that Twitter chat, join another! @NPF and Cyndi Lauper are teaming up to chat about her long struggle with psoriasis. You can submit questions and follow the conversation with #ImPsOReady.
Donate a Photo campaign by Johnson & Johnson will give NPF $1 for each photo donated online. The goal is 25,000 photos by the end of the year or $25,000, whichever comes first, but NPF will receive a minimum of $10,000. It’s so easy to make a difference, so get snapping those pix! Visit the site to download the app and get started. Choose NPF as the cause to help and your photo will help a person in the fight against psoriasis.
Take Action
Researchers have made enormous strides in finding new treatments for psoriasis patients. Many of these studies were made possible by grants from NPF. I commend NPF for its work in connecting researchers and psoriatic patients face-to-face and facilitating genuine talk that brings out big change.
But researchers can only do so much, especially when there is a small pool of subjects and information at their disposal. As patients, we need to do our part. We need to join clinical trials. We need to add our information to the Citizen Pscientist project that collects data from patients across the globe. We need to help fundraise and donate so that NPF can continue provide grants that will support research for better treatments and for a cure.
No one can tell the story of psoriatic disease better than those living it every day. Speak up and tell members of Congress that we need their help to facilitate action. Whether it be a shortage of pediatric rheumatologists or the astronomical high costs of medication, make your story heard again and again until bills are passed to help patients live better lives. It’s not hard to do, and your voice does make a difference. Advocacy equals change. Check out NPF’s advocacy page to find out more information.
Create Change
Hope + Action = Change. It really is that simple.
Get started and make a difference in your family, community, state, country and even worldwide. Share your story on the International Federation of Psoriasis Associations’ website and celebrate World Psoriasis Day 2015 with its Wall of Hope.
If we work together, anything is possible — even a CURE for psoriatic disease!
