Tuesday, May 6, 2014

A Day to Distinguish

Arthritis: "Oh, my grandmother has that – take a couple Advils and you’ll be fine."

Autoimmune arthritis: "Um ... huh?"  

"It's not just arthritis."
This is where IFAA – the International Autoimmune Arthritis Foundation – comes in.  Started in 2009 by a woman just like me who was frustrated by the lack of understanding about her autoimmune arthritis diagnosis, IFAA aims to raise awareness about the difference between the two. 

In addition to the physical symptoms, patients with autoimmune arthritis diseases are often on the receiving end of judgment, doubt, and derision from doctors, colleagues … even friends and family.  It’s not (entirely) their fault though – much of this contempt comes from a lack of understanding.  Most people have never heard of these diseases and have no idea how they affect us, so they can’t imagine it could be as bad as it truly is.  Because autoimmune arthritis diseases are so inconsistent in how they present from patient to patient (and even within one patient, from day to day), doctors have a hard time diagnosing us … which means it’s a long time before we can get answers – and even longer before we can get treatment.  IFAA hopes to change all that.

One of its greatest endeavors is the upcoming World Autoimmune Arthritis Day.  WAAD brings together patients, caregivers, advocates, health professionals, and more, to differentiate autoimmune arthritis diseases from the more familiar degenerative (osteo)arthritis.  WAAD is a 47-hour online convention that includes interactive chats, virtual booths from 40 different nonprofits, a research room, wellness center, community lounge, and resources for all.  This year’s theme is A Day in the Life of an Autoimmune Patient.  By hearing (reading) directly from those of us who experience it, the people who care for us can get a better understanding of what it’s like, what we need, and how best to support us.  At the same time, patients living with autoimmune arthritis diseases can find information, support, and connection - the things we need most as we deal with the challenges that autoimmune arthritis brings.
{Register now!}
This year, I'm so excited to have a bigger role in the event.  Not only will I be volunteering (surprise surprise), but I'm going to be one of the featured bloggers.  WAAD will link here to Float Like a Buttahfly, and I'll be interviewed there during a live chat!  There will also be a chance for it to be more interactive, so I can "meet" some of my readers and answer their questions.  I'm really looking forward to the opportunity, and honored that the folks at IFAA like what I do enough feature me (among other writers) - both on their official blog page, and as a part of this important day.  

To an extent, only someone with an autoimmune arthritis disease can really know what it's like to live like this.  What we don't always realize is that only someone who loves someone with an autoimmune arthritis disease can really know what it's like to sit back and feel helpless, confused, and angry, watching us suffer from an illness that no one can explain.  That's why communication is the most important piece.  We have to do our best to really let each other know what we're going through, and do our best to listen when our loved ones are sharing their feelings with us.  WAAD helps to bridge the gap, by offering more information, more resources, and more opportunities than any one person can provide.  I hope to "see" you there!

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