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Thursday
Apr042013

Sharing is caring.

One of my favorite phrases is “Sharing is caring.”  That’s what this post (Day 4) for Health Activist Writer’s Month is all about sharing.  Sharing resources…  I am happy to share resources that have worked for me but much like the disease itself, lupus patients tend to find support and resources that fit them on their own.

If I was a newly diagnosed lupus patient (in the United States)… I would want to reach out to one of the big three organizations to help me get a better understanding of this chronic disease the doctor called “Lupus”  Since this is my list, I would suggest that you skip the orange and head over to the purple people.   There is no better place to start than with the Alliance for Lupus Research.    http://lupusresearch.org/

There are a number of support groups available to you, many local hospitals provide resources for those newly diagnosed with chronic illness.  You may or may not find your “comfort zone” immediately – keep searching.  Sometimes, the best support you will find is online.  Whether from one the many Lupus communities on Facebook (shameless promotion time) such as “Lupus Awareness is Fun” https://www.facebook.com/LupusAwarenessIsFun?fref=ts or “Friends Against Lupus” https://www.facebook.com/AgainstLupus?fref=ts there are (thankfully) too many to count and with a little exploring the newly diagnosed “lupie” as Lupus patients call ourselves will be finding support and building friendship with her lupus “sisters” before she (90% of lupus patients are women, so most likely she.) will learn to spell Systemic Lupus Erythematosus.

After the “lupie” gets to know her new normal, she will find that many of her Facebook friends and support team have taken to blogging.  There is a lupus blog for every personality and I don’t want to neglect any of my friends, so when my suggestion would be to ask your new friends which blogs they like.  Next up, I would tell the new “lupie” to search #lupus on Twitter.  That is how my friend and “lupie sister” Tiffany found and met each other.

(Here is Tiffany @TiffanyAndLupus during a Skype session, support can come from anywhere!)

Once the “lupie” connect with a few patients, her desire to advocate and become an activist may take over that’s when I suggest hitting the big guns and connecting with the “Partnership with Patients” community on Facebook  https://www.facebook.com/groups/295223483902051/?fref=ts

“Partnership with Patients was created in response to Regina Holliday’s experience in attempting to participate in the Partnership for Patients kick-off meeting, a CMS-funded initiative. Regina experience can be read in her post Pecking Order.

This is a friendly group. We will be honest but kind. Please be considerate of others. Remember if you are here you are helping to build a better tomorrow. “

The best part about the Partnership with Patients is the PEN = Patient Engagement Network that @ReginaHolliday has created with “The Walking Gallery” when you go to health care conferences and want a conversation starter, simply wear one of Regina’s painted jackets and the communication flows.  Don’t worry if conferences aren’t for you.  You can become an advocate and activist from the comfort of your laptop.  I would share (and I do) that new patients find a health care chat and “lurk” then join in and you will find yourself welcomed into the health care community.

At this point, I would say welcome to the world of lupus patient advocacy.  If I can help guide you along the way, feel free to reach out and contact me.  May you “find the flair and avoid a flare” as you discover your “Lupus Style.”

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