Posts tagged ‘AS’

May 16th, 2012

Walk Your A.S. Off – Celebrating World Ankylosing Spondylitis Day EVERY Day!

by Susan

May 5th marked the celebration of World Ankylosing Spondylitis Day but we’re thrilled to see Ankylosing Spondylitis Health Activists raising awareness all month (and year!) long.  Meet Jenna Visscher, creator of Walk Your A.S. Off, a walking event that brings together Health Activists all over the globe to join in tracking steps to circle the globe!  Here’s what Jenna had to share about Walk Your A.S. Off, being an Ankylosing Spondylitis Health Activist, and the many ways you can get involved!

 

How did the idea for Walk Your A.S. Off come to be?

I saw this video http://www.youtube.com/watch?v=aUaInS6HIGo that shows how much our chances of many health conditions are greatly reduced if we simply walked for 30 minutes a day. It’s a very powerful video. Then I started speaking with the Arthritis Foundation’s Rocky Mountain Office about being a part of their speaker’s bureau.

 

For the first time in over 9 years of having lived with ankylosing spondylitis I really heard the message that we have to move. It is a difficult concept to embrace since moving very often equals pain for someone living with chronic illness and pain. I then realized that if after all this time I hadn’t heard the message then perhaps others hadn’t either.

 

So I started thinking about how to get not only myself to start moving more but people in my community too. That is when the catchy phrase came to mind. It’s catchy and kitschy and I thought with a cute logo we could have some fun and do some good for ourselves and maybe raise some awareness at the same time. Walk Your A.S. Off was then born! I decided to keep it simple and just create the project via Facebook & Twitter with some more information available on my blog. No registration or fundraising – no reason NOT to do it.

 

The original goal was one million steps! I realized only a week in with almost 30 teams coming on board that we would have to rethink the goal. That is when two advocates of the AS community both came up with circling the globe! Michael Smith & Cookie Hopper both are credited for that great idea and we all set about making it happen. And we did it – we circled the globe in steps made in the name of ankylosing spondylitis!

 

What are you most excited about in the online health community or Health Activism?

I’m excited to see the new frontier of health advocacy becoming a more main stream concept. It’s still a bit of the Wild West out here in our communities but I think with the help of organizations like WEGO Health supporting our efforts, corporate America and big pharma are really seeing the power of the patient advocate. Successful grassroots efforts and initiatives are huge in our ability to show we are serious and professional in what we are doing and most certainly we are not to be underestimated!

 

How can other Health Activists help raise awareness about Ankylosing Spondylitis?

Raising awareness is difficult to define. Some see it as a very local, making sure your family and friends know what the disease is that you live with. Others work to do wonderful disease specific support projects and work for and within the community. I tend to think that to really be successful in raising the knowledge about what AS is and frankly that it even exists, that we have to do projects and initiatives that are of interest outside of our communities and the people who know about AS intimately.

 

We can talk to ourselves until we’re blue in the face about the need for “the world” to understand what a life with AS entails but we’re speaking to the choir. Find something you love to do and then tie it in with advocating for better knowledge and research for a cure for ankylosing spondylitis or whatever disease you specifically wish to advocate for. Once you do that, people will listen. They will be curious and your heart will be in it.

 

If you just talk about how horrible the disease is people tune out, it’s unfortunate but it is what it is. Add YOU to the mix and have the advocacy be only part of who and what you do. When your heart is truly in what you do people take notice, they are curious, and they will want to hear about your passion and as a byproduct of that, they will learn about the message behind your reason for sharing.

 

Step outside the “advocate mold” and do something unique.

 

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May 4th, 2012

Health Activist Roundtable on Ankylosing Spondylitis:

by Caitlin

May 5th marks World Ankylosing Spondylitis (AS) Day, and in order to spread awareness, WEGO Health recently held a Health Activist Roundtable with several leaders of the online AS community.  In line with WEGO Health’s mission to set the record straight this month, AS Health Activists debunked myths and misconceptions and shared their hopes for increased awareness both amongst AS’ers and in the medical community at large.

 

What AS Health Activists want YOU to know

  • Awareness is the number one priority of the AS community.  Many people suffer from this disease and yet no one knows about it.  Patients often know more than their doctors, who often lump AS in with RA.

 

“I think people need to be clear about the precise symptoms that go along with AS and how it’s different from chronic fatigue syndrome and  fibromyalgia.  Mental health and living with chronic illness is also an important topic that should be covered.”

–ThePositivePear(@thepositivepear)


  • For those living with AS, your rheumatologist might not have all the answers.  Because AS shares symptoms with CFS and fibromyalgia, an internal medicine doctor may have better tools to deal with those symptoms.
  • Complementary therapies, including regular exercise and dietary changes, can HELP to naturally manage AS, but everyone responds to these interventions differently.

 

“The difference that I have run into is people not understanding the difference between autoimmune arthritis and degenerative arthritis. AS doesn’t just affect the joints, but also the internal organs. The eyes, heart, lungs, liver, stomach can also be affected by the disease.  We need to talk about this outside the pain that we’re experiencing on a daily basis.”

–Peachy (@peacheypains)

 

Myths and Misconceptions about Ankylosing Spondylitis

Myth: Ankylosing Spondylitis (AS) is the same as Rheumatoid Arthritis.

Fact: AS shares many symptoms with RA, as well as Chronic Fatigue Syndrome and Fibromyalgia. AS differs in several ways, primarily in that it can result in “fusion” of the spine.

 

Myth: AS is a rare disease.

Fact: “This disease isn’t rare but the disease isn’t well known.  33 million people around the world have spondylitis but it’s very isolating, I’ve never met anyone with it. The majority of the time we know even more about the disease than the doctor does.” – Kelly (@Hope4AS)


Myth: AS is a man’s disease.

Fact: AS does not discriminate by age or gender. Women are often misdiagnosed or underdiagnosed.


Thanks so much to all the Health Activists that participated, we hope that this Roundtable will help you to spread AS awareness and can’t wait to hear about all of your efforts today for World AS Day!  We hope you’re wearing blue today!

 

 

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May 1st, 2012

Setting the Record Straight this May

by Amanda

Image Credit: larimdame on Flickr

We’re standing up and speaking out this month. It’s time to Set the Record Straight.

 

Inspired the spirit of Health Activists who tirelessly confront misconceptions, correct myths, and work to break down stigma – we’re celebrating tenacity and the power of knowledge this month. All month long on our social channels (blog, Twitter, Facebook, Pinterest) we’ll be setting the record straight and talking about raising awareness through telling the truth.

 

We hope you’ll join us in combatting myths, misconceptions, and stigma this May. Think back to when you first started researching your health condition or health focus – What did conversations look like and how have they changed over time? What did you learn that you didn’t know when you started? And  - What myths do you still hear floating around in the public, media, and beyond – and how can we bust those myths together?

 

Here are just some of the things we have planned for this month… (Stay tuned for more on each item as the month progresses)

 

That’s BS! Every Thursday on our Facebook page we’ll be calling bullsh*t on some of the issues that we find frustrating and downright unfair. When advocating, you are up against some pretty tough barriers and people (and establishments) who just don’t get it. What is something that just really gets your goat? Share with us on Facebook each Thursday – as we encourage Health Activists to Call BS.

 

TMI Tuesdays – Some folks around the web take the opportunity to open themselves up to their communities by having TMI (Too Much Information) Tuesdays. Because, let’s face it, there are lots of intimate, uncomfortable, and downright strange parts of life that we all experience. What better way to confront these things than by putting everything out in the open by talking about and discussing them? Consider delving into those “TMI” parts of your health condition each Tuesday this month and encouraging members in your community to ask and discuss their most personal or uncomfortable issues. It is through conversation and confrontation that we can help each other cope.

 

Setting the Record Straight. We know that education and facts are the only real way to start combatting myths. So join us in sharing actual evidence and proof – to shut down some of the most common health myths. In the week of May 14th we’re going to be setting the record straight. What’s something that you wish everyone knew about your health condition but something they still don’t seem to get? What’s a myth you absolutely cannot stand hearing about and wish to correct once and for all? Join us in posting a picture of yourself (or the person you advocate for) with a fact or truism written on the pic – and share it on our Facebook wall the week of May 20th. The person whose fact & picture gets the most “likes” will get a feature on our blog, be shared on our Facebook page for the last week of May, and will be in our community-wide June newsletter.

 

Raising Awareness… May has a bunch of health observances – many of which are celebrated by members of our community. Do you have something planned for your community this May? Among the communities we’re focusing on are: Ankylosing Spondylitis (AS), Lupus, Celiac Disease, Food Allergy, Lyme Disease, and Mental Health.


Mental Health Blog Party. On May 16 join us in participating in a blog carnival for Mental Health Awareness Month. Today write about how mental illness affects those within your health community and what those discussions about this topic look like. Where does stigma come into play when people in your community are living with mental health issues as well as their chronic condition? How do you keep your mental health in check? Read more about the Mental Health Blog Party here (and RSVP to attend!)

 

#HAchat on DSM-V. On May 29th we’re having a very special HAchat on the DSM-V hosted by Autism Health Activist Kaz of The Balancing Act. This chat will delve into topics that relate to the new diagnostic criteria in the upcoming DSM-V especially with regards to: identity and diagnosis. You won’t want to miss this chat!

 

Health Activist Roundtables. We absolutely love chatting with Health Activists live in our Roundtables and live-tweeting them as we discuss awareness, popular topics, and what we can do to help bridge the gap between patients and healthcare companies. This month we have some great HAroundtables planned including: Lupus Roundtable on May 4th at 2pm EST, Food Allergy Roundtable on May 16th at 12pm EST, and roundtables focused on mental health. And stay tuned for more HAroundtables!

 

What are you working on this month? Is your health community celebrating awareness this month with an event or project? We’d love to help you promote.

 

Looking forward to gathering our arsenal with Health Activists so, together, we can combat myths, misconceptions, and stigma.

 

 

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November 16th, 2011

Applauding: Jenna of The Feeding Edge

by Amanda

As you may know – we love celebrating Health Activist accomplishments! You work hard every day to do awesome things for the people in your health communities and are always raising awareness in new ways. It can be so uplifting to read a great blog post, see a new project come to fruition, and watch efforts make a difference. It’s why we do what we do – and why you should feel great about yourself.

 

photo credit: http://thefeedingedge.com/?p=3867

Similarly – there’s nothing quite like seeing someone in your community get recognition for their work. A triumph for one Health Activist is a true triumph for Health Activism!

 

So today we wanted to give a shoutout to Health Activist for the AS community and advocate artiste – Jenna Visscher – for her hard work. We’re excited to share with everyone this article that features Jenna, her work, and how she’s doing big things for the AS community both on and offline.

 

The article in The Saturday Evening Post celebrates Jenna’s project to paint an apple a day (thus her community name!) to raise awareness and funds of the Spondylitis Association of America. As Jenna says in the article, “Apples symbolize that health and healing are possible despite dealing with a difficult and painful disease.”

 

It’s exciting to see Jenna (and her cool project) featured and see some facts about AS in there alongside her story to offer quick info that can open the eyes of readers who may be unaware of AS. Awareness!

 

We encourage you to check out the article to learn more and drop Jenna a tweet to let her know what you  think! Keep up the great work, Jenna!

 

If you haven’t yet – here’s a guest post Jenna wrote for the WEGO Health Blog this year. And be sure to check out her community The Feeding Edge and follow her on Twitter and Facebook.

 

 

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June 29th, 2011

Health Technology: Apps & Activism Webinar Follow Up

by Amanda

 

On Monday night I hosted an awesome webinar conversation between wise Health Activist Kelly Johnston and Rock Health members Halle Tecco and Ryan Panchadsaram. As expected, I learned a bunch of new things about apps, how physicians really feel about technology (hint: they love it), what patients can do to integrate apps into healthy lifestyle choices and also improve their overall self-care and health care through technology. Lots of cool app-suggestions were given as well. I can’t wait to see how the mobile health conversation continues to evolve and the app stores continue to get virtually stocked with apps that will quite literally change people’s lives.

My take-aways and a list of the apps recommended by our webinar panelists are all after the jump.

Jump to read on!

read more »

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June 10th, 2011

Health Technology: Apps & Activism Webinar

by Amanda

In honor of our June theme of Health Technology – we’re putting on a webinar event all about health apps. We’ll be discussing how apps are influencing the healthcare world and how they will improve your Health Activism and help your community!

Join us live on Monday, June 27th, at 9pm EST for a conversation with Halle Tecco, founder of seed-accelerator and idea incubator for health apps – Rock Health (@rock_health) – and Ankylosing Spondylitis Health Activist and app enthusiast Kelly Johnston (@Hope4AS)! We’ll discuss the apps that are already out there influencing Health Activism, hear how Kelly is getting into the app world, and Halle will tell us how you can turn your idea for an app into a reality! Let’s get the inside scoop on this new mobile trend together – it’s going to be an exciting event and hopefully we will all learn a lot!

What questions do you have for either of these two app-tastic individuals? Share any questions when you sign up to attend here:

 

RSVP to “Health Technology: Apps & Activism” Webinar!

 

We hope to see you and your community members there and on Twitter (as always – tweet with us using #wegowebinar!)

 

 

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