Rheumy Rounds™…

I recently started a foray into podcasting with my IFAA cofounder Tiffany. She is the brains behind the project, in which patients co-host a podcast to discuss issues impacting patients in the autoimmune/autoinflammatory arthritis community. Our latest series is called “Rheumy Rounds”. Personally, I think it is ground breaking.

How many of us (patients) have stories about trying to find a doctor who listens to us? How many of us have questioned why our diagnoses keeps changing? I remember sitting across from a rheumatologist with multiple red, swollen joints, but my blood work was “normal”. He told me I needed to stop taking the medication prescribed for me by my previous rheumatologist (who retired) because there was nothing wrong with me. When I asked him “Why are my joints to swollen if there is nothing wrong with me?”, he replied, “I don’t know.” Uh, what?? I’m not a doctor but multiple swollen and hot joints indicate to me there is something wrong. I know I am not the only patient to have this kind of experience.

If you’ve been following my story, you know my diagnosis has changed multiple times over the years. I’ve asked why, but have never truly understood the reasoning. I’ve been told, “It doesn’t matter what your diagnosis is, we will treat you the same way.” But when I tell my friends and family, they look at me with such confusion and doubt.

In Rheumy Rounds, we discuss these confusing topics with Dr. Alfred Kim, a rheumatologist and assistant professor at Washington University, and Founder/director of the Lupus clinic. Also joining in on the conversation is Jerik Leung, a researcher in the Master of Public Health Program at St. Louis University. I think you will find our discussion really interesting. This podcast is an open and honest discussion between patients and professionals. Take some time to listen and let me know what you think. I’m honestly very proud of this podcast and I can’t wait for more to come!

Click here to check out the podcast. http://bit.ly/rheumyrounds

Here is the mini breakout episode. Check it out! https://www.aiarthritis.org/podcast-miniep13

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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.

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