Redefining Research

When you get diagnosed with a chronic illness, you go through various emotions.  I literally went through the stages identified by Elizabeth Kugler-Ross “5 Stages of Grief”.  Denial, anger, bargaining, depression, and acceptance.  Each stage prior to acceptance was painful.  Hell, even acceptance hurt pretty bad.  The life I thought I would have disappeared.  I had to learn to live with my new life.  See I had grown up knowing two women who were significantly impacted by rheumatoid arthritis.  My neighbor and my aunt.  When my diagnosis came, I panicked.  I knew how hard things were for these two women.  I feared that life.

Eventually, I learned how much medicine has changed.  The drugs I was using was much more aggressive at fighting RA than those I saw battling the disease in the 70’s and 80’s.  I slowly learned my life would be different, but it would still be good. Some days are very difficult, others not so much.  Initially, I felt utterly alone in my struggle.  In 2009, I came across other patients living with various types of autoimmune arthritis via Facebook and other social media sites.  I joined the International Autoimmune Arthritis Movement, and eventually cofounded IFAA (International Foundation for Autoimmune Arthritis).  I became an advocate for patients living with RA.   I wanted to see a change in how patients are diagnosed.  How patients are involved in research, and how patients can let their voice be heard.   I speak at some conferences to spread awareness, but for the most part, I do most of my advocacy from the comfort of my sofa.

Now IFAA is helping other patients let their voice be heard.  We are redefining research by putting patients in the driver’s seat.  Why is research so important?  We need to get the patient voice involved in the research process.  Who knows our symptoms better than we do?  On January 4th, we are launching ACT (Autoimmune Community Team) in which patients diagnosed with Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), or Axial Spondlyoarthritis (axSpA/nr-axSpA) will get an opportunity to lend their voice to change research standards and guidance regulations now and in the future. The project starts recruiting January 4, 2016  so if you are diagnosed and want to change the world from your sofa too, sign up!

This is an exciting project.  Quite often, I hear complaints that most research recruitment is for RA patients only.  Now patients with PsA, AS, and AxSpA will get their chance.  Join us now
Learn more here:  
Take a chance and let your voice be heard, from the comfort of your sofa!

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

4 thoughts on “Redefining Research

  1. What a compelling story. I also experienced the 5 stages of grief when I got diagnosed wit RA over 10 years ago. It's never easy and it takes a lot of courage and social support to accept an autoimmune arthritis. Are there any thoughts of involving patients with Sjogrens Syndrome in research in the near future?


  2. I am glad to hear that IFAA is starting research on other types of arthritis. I want to become more involved with IFAA, particularly with the Online Wellness Support Group as I am a Dietitian working with patients living with arthritis. Will be looking forward to joining the Volunteer training coming up in January. Cheers!


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