Archive for May 10th, 2012

May 10th, 2012

Lupus Awareness is fun!

by Amanda

 

 

 

 

 

Today is World Lupus Day and WEGO Health is decked out in orange and purple pride (pics to come)! We’ve heard from so many Lupus Health Activists that lupus awareness is fun, and we are joining in today by helping to promote education and visibility of this invisible illness.  Several Health Activists joined us for a Roundtable on lupus to debunk myths and spread the word on the most important issues to the lupus community, check out what Tiffany (@TiffanyandLupus) and Amanda (@LALupusLady) had to say:

 

 

“I found the joys of lupus. I’m learning to appreciate everything every day. It’s like a gift. There are no returns, no exchanges. So what am I going to do with this present? I can’t re-gift it, unfortunately. There are so many lessons that I’m learning every day. And really to just be who I am.  Sometimes I’m a lupus patient and sometimes I’m a jets fan, sometimes I’m a wife and sometimes I’m a cat mom. Sometimes lupus is first on the list and sometimes it’s last one the list.”

-          Amanda from lalupuslady.com and @LALupusLady

 

“On the subject of the end of life and death. There’s a stigma surrounding death but it’s something that we need to discuss and that’s present in conversation.  Especially for those with chronic illness. It’s something that must be discussed before we get to that point in our life and our health. We would be less afraid if we were more informed about end of life care.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

 

“There’s no cure for lupus. Each patient is unique and you’re going to present differently. So our discussion is unique and different because every lupus patient is like a fingerprint. We’re all going to have our own lupus. But our community unites us together.”

-          Amanda from lalupuslady.com and @LALupusLady

 

“I often feel isolated because most Lupus Health Activists are located in the United States and I am in Australia and it feels like they all know each other.  The advocacy presence just isn’t as strong.  Benlysta has not yet been approved here but I am starting a petition to do so.”

-       Iris from http://www.sometimesitislupus.com/ and @IrisCarden

 

 

“Sometimes living with lupus feels like being in the Olympics and the games never end, but at least we’re in it.”

-          Amanda from lalupuslady.com and @LALupusLady

 

“I think they would be surprised at how much fun we have while living with lupus. It can be such a serious disease and since it’s chronic and there’s no cure, we have to live with it and learn how to have fun while living with it. In the lupus community there is a ton of glitter tossing, butterfly wing flapping, feet stomping… there’s tons of fun going on. We like to look at the positive side and understand that there is a silver lining in every storm cloud.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

 

“Even if you’re in your pajamas your pajamas can be cute and you can have really cool socks. And if you’re out and able to get out and you can wear purple wig with butterfly wings or you can be like me and wear pule boots and a cape. With our wings and our cape, it’s not an easy flight, but we’re on this journey together and we’re making it fun.”

-          Amanda from lalupuslady.com and @LALupusLady

 

“I think it’s really important for health activists to join across conditions.  What benefits one health community benefits another. I feel like if we all move together in the same page we can move towards better healthcare.  We need to merge our community across conditions so we’re coming together for the same thing.”

-          Tiffany from http://www.tiffanyandlupus.com/ and @TiffanyandLupus

 

Thanks to all the Health Activists that participated, we hope this Roundtable will help you to raise lupus awareness and can’t wait to take part in more lupus awareness events throughout the month!

 

To download our Lupus White Paper with the complete findings from our Roundtable visit: http://info.wegohealth.com/lupus_onepager/.