As My Joints Turn

My Autoimmune Soap Opera

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!

http://www.ifautoimmunearthritis.org/act-redefining-research.html


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?

    Like

  2. Thank you Christina. At this time, we are only looking at those three particular diseases; however, if someone has SS in addition to those diseases, they will not be turned away. You can learn more in the faqs section of our website: http://www.ifautoimmunearthritis.org/act-redefining-research.html

    Like

  3. 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!

    Like

  4. Excited to hear that!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

A Chronic Spoonful

Thoughts and stories from the world of chronic pain, illness, and disability

Lavender and Levity

Laughing at myself, and learning to love (live with) it!

Chronically Undiagnosed

A therapist's journey through chronic illness

Reclaiming HOPE

Learning to Thrive, Not Just Survive, With Fibromyalgia

Past the Isle of Dogs

My adventures in self-publishing and other gibberish

Carla's Corner

Because I can't keep silent

∞ itis

Rheumatoid Arthritis, autoimmunity, and life

Wheelescapades

Tea, Tours and Escapades

Jamison Writes

Not Like The Whiskey

The World Sees Normal

How Does the World See You?

The World Sees Normal!

The Truth About Chronic Illness

MINAMACS DAILY BLOG

My favorite things Nail designs, makeup tutorial,qoutes,food art,Health & wellness,candles,music.etc..

Chronically catherine

Musings of a Young Arthritic

Limberation

Limber Up to Live Life

Healthy Body Support

Fuel your body with all the nutrients it requires for healthy, long lasting, energetic service.

Sad N Blue

Effecting coping methods for depression and anxiety

rawthoughtshealing.wordpress.com/

Uncensored thoughts and holistic services to help heal your body and mind.

Nikki's Confetti Life

Compositions of my life energy

debthorpeknits

Just another WordPress.com site

FairyLab Soaps, LLC

Handcrafted Milk- & Yogurt-Based Soaps and Such

%d bloggers like this: