World Psoriasis Day is a day which is very special to those living with psoriasis. For years, members of the International Federation of Psoriasis Associations (IFPA) considered the idea of creating a national day for psoriasis sufferers. Finally in 2004, members and non-members of the group launched the first World Psoriasis Day to raise awareness for psoriasis and psoriatic disease.
These four main objectives are not only for World Psoriasis Day, but are things we can follow all year round.
- Raise awareness for psoriasis
- Encourage health care decision makers
- Deliver relevant information
- Provide a patient voice platform
Just how can we make sure we accomplish these objectives, both today and every day? Each year, there are a set of themes set around World Psoriasis Day to help us shift our focus and efforts - with this year’s theme focusing on hope, action, and change. Those three words mean a lot to psoriasis sufferers, and if fulfilled, can change the way we think as patients as well as those around us.
Here are some ways that incorporating hope, action and change in your own life can help transform the way you live with psoriasis.
There are several reasons why you should feel hope, especially surrounding psoriasis research. Currently the National Psoriasis Foundation has an active BioBank filled with the DNA of psoriasis patients. This biobank helps scientist to study the genetic factors of psoriasis, in order to gain a better understanding of the disease and hopefully lead to a cure. Currently researchers have discovered a mutation in a gene which could be the reason why some people's psoriasis is triggered by environmental factors. There are also discovery and research grants provided by different organizations to help with the research of psoriasis. At times, the decision for these particular projects are determined by important stakeholders, which is why it's important to tell your story and let them know why psoriasis research should be funded.
Be an influence to those around you: Express yourself on social media and tag key stakeholders such as doctors, politicians, insurance companies, pharma companies, and health influences. Tell them your story and why they should care about finding a cure for psoriasis and access to care.
25 years ago the only platforms advocates had to use were radio, television, magazine ads, and the telephone. While these resources are helpful, they are limited to the amount of people they can reach. Now, in today’s time, we not only have those platforms, but we have additional things like social media which is a powerful resource one can use to reach a variety of audiences nationwide. Here are some quick facts on social media:
Help raise awareness: A short video is worth 1.8 million words. This means that video and pictures will influence people the most when you want your story heard. According to Pewinternet.org, 71 percent of online adults use Facebook, which means although you should neglect other platforms, Facebook may be the best place to get your story out to and connect with other adults with psoriasis.
Each social media platform has it’s own audience and advantage. Overall, there are approximately 1.7 billion people who have active social media accounts giving you the chance to reach MILLIONS of people. If we all work to reach the objectives together, we will create millions of impressions in the social media world.
Here are 10 simple challenges for you to complete that can help bring about major change in your life and the lives of others! If you can’t do them all, pick at least 3 to accomplish. Comment under this post and let me know how you did!
Send one tweet about your disease and tag at least 3 members of the groups I mentioned above.
Make a 15 sec video of why World Psoriasis Day is important to you! You have to be creative since it’s only 15 secs.
Post to vine, Instagram, and as your profile video on Facebook.
Write a blog post utilizing Facebook or your personal blog and post it throughout the day. Tag people and encourage them to read and share.
Retweet post from the IFPA, The National Psoriasis Foundation, and Health Central.
Call your local representative and tell them what World Psoriasis Means to you and why your disease needs to be on their agenda.
Reach out to your local news outlet and ask if they could tweet out about World Psoriasis Day and provide a few facts about the disease. Prepare a list of facts before reaching out to them and send it. The easier for them to promote, the better.
Send a text message to 5 people in your phone educating them about your disease, and why World Psoriasis is important to you.
Message someone with psoriasis and tell them how much you appreciate them, and how important they are to this society.
Tweet, Facebook, or make a video to post telling people 5 facts about psoriasis