9 posts from October, 2013

World Psoriasis Day – Global access to treatment

Posted October 29th, 2013 by

World PSO Day

The international community is coming together today to raise awareness about psoriasis, and this year’s theme for World Psoriasis Day is ‘global access to treatment.’  The International Federation of Psoriasis Associations (IFPA) includes almost 50 member associations around world, including the National Psoriasis Foundation (NPF) right here in the U.S. They’re helping to spread the word about this chronic, autoimmune disease that affects more than 125 million people across the globe.[1] So what are the messages we’re all trying to get out there today?

 

  1. Raise awareness: to let people with psoriasis know that they’re not alone
  2. Improve access to treatment: to move it up on the healthcare agenda
  3. Increasing understanding: educate people about the condition so that they can discuss it openly
  4. Building unity among the psoriasis community: to provide a platform for the patient voice[2]

And here at PatientsLikeMe, the psoriasis community isn’t just raising awareness today; they’re doing it every day, all year round. Together, they’re learning to improve their quality of life and are paving the way to better care by sharing their experiences. Check out some of our member interviews that are up on the blog to get a glimpse of what living with psoriasis means to them.

Maria – The real me
David – I still haven’t given up hope
Erica – Finding peace and confidence

Raise awareness with one click – just click here and a tweet will go out from your own twitter account saying “Today is World Psoriasis Day and I’m sharing my story with @PsoriasisIFPA and the @patientslikeme #psoriasis community. RT #PLMer.” How easy is that!?

If you’re living with psoriasis, connect and share with more than 4,000 members in our growing psoriasis community. Use the symptom and treatment reports to learn more about your own health, and see how psoriasis affects other peoples’ daily lives, like jumping in swimming pools or going to tanning salons.


[1] http://www.worldpsoriasisday.com/web/page.aspx?sid=8538

[2] http://www.worldpsoriasisday.com/web/page.aspx?refid=10


Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis

Posted October 28th, 2013 by

Everyday on PatientsLikeMe, people just like you are sharing their experiences, contributing to real-time research and raising awareness, together. Jen is part of your patient community and is living with myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. She’s working on a new project called Canary in a Coal Mine to help shed light on this largely misunderstood condition.

“Three years ago I became devastatingly ill. Now, there is not a single waking moment when I don’t feel sick. When faced with what seemed like an insurmountable obstacle, I felt the only choice I had was to transform suffering into grace. I believe that by telling these stories, by showing the world what it really feels like to live life with ME, we can change forever the way the world sees this illness. And, by showing the true face of ME, maybe we can put an end to the many injustices that ignorance creates.” –Jen