Meet Rheumatology Mommy

27971658_10109701811354208_8919167788009179146_nHi!  I’m Melanie.  I married my high school sweetheart, Kevin, in 2005 after graduating from the amazing and wonderful Purdue University (Go Boilers!)  In 2008, we welcomed our first beautiful daughter, Katelyn, then polished off our family with the addition of Megan in 2011.

In October 2012, Megan was diagnosed with Polyarticular Juvenile Idiopathic Arthritis.  Her diagnosis changed my life completely.  I suddenly became a “rheumatology mommy” in addition to being a regular mommy (which was hard enough, if you ask me!).  Rheumatology mommy had to look at life differently.  Are we going somewhere where people may be sick?  Does her knee hurt from arthritis or did she bump it on something? Is her fever just from her disease, or is she getting sick?  Is her elbow dislocated or just inflamed?  Will she go blind from this?  Will she end up using a wheelchair?  Will we need to move to a ranch style home with no stairs?  Will she ever be “normal”?  Will I ever feel “normal” again?

In November 2013, she had been doing well on a new treatment plan, and I decided I wanted to be more involved in her care at the hospital level.  I reached out and asked how I could become more engaged.  Little did I know, that conversation would lead to an entire new world for me.  Soon, I was representing our amazing hospital on the Parent Working Group for PR-COIN, the Pediatric Rheumatology Care and Outcomes Improvement Network.  From there, I started working with a PCORI (Patient Centered Outcomes Research Institute) project called PARTNERS, formally joining PR-COIN, the Arthritis Foundation, CARRA (Childhood Arthritis and Rheumatology Research Alliance), the Lupus Foundation of America, and Cure JM.  In April 2015, I attended my first CARRA Annual Scientific Meeting, and was hooked on research.

In 2016, I became so busy with my rheumatology work that I left my amazing job working with a non-profit horse therapy program to focus on JIA and research.  It was around this time I also started my own rheumatology struggle.  I was diagnosed with Ankylosing Spondylitis, and spent the next year trying to find the best treatment plan to manage my own disease progression and symptoms.

I now spend my days dedicated to the quality improvement and research efforts of PR-COIN, CARRA, PARTNERS, and several other JA projects.  Our family participates in fundraisers and events with the Arthritis Foundation and we’ve found a very large extended family in them.  I often tell people I’m sorry we’ve had to meet, but I’m so very grateful to know them.

My life, including my work, is an open book.  I am always happy to share my experiences with JIA, AS, and my research work.  I’m proud of the work I’ve done, and the job I do advocating for my daughter’s care.

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