This September, 2025, will be 20 years since I sprained my ankle at the age of 17 while playing volleyball during the first week of my senior year of high school.  I went from a 3 sport athlete to sitting on the sidelines.  

CRPS occurs when the body overreacts to an injury and despite the initial injury healing the things that were meant to heal the injury end up causing damage in the affected area, thus leaving the nervous system stuck in a pain loop.  

Unfortunately, at this time there is no treatment or cure, and the best course of action is to just treat the symptoms. After many pain-filled months and years and thousands and thousands of miles traveling to try to find a doctor who knew what was wrong we have spent countless hours in specialists’ office’s, PT, OT, in-patient hospitalizations, and even inpatient physical rehab.  I had another setback with my health due to the comorbid conditions assoicated with CRPS and the fact that it can spread throughout the body, both of which happened to me.  I relearned how to walk in 2023 and was able to work my way up to walking a mile after not doing any weight bearing for over 8 years.  She relearned how to go up and down stairs all thanks to Hartford Hospital’s In-Patient Rehab Unit (IRU).  I was thrilled to actually start off last year's 5th Annual Virtual CRPS Awareness Walk taking steps with my walker.  Although my setback has landed me back in a wheelchair, and I am disappointed I am not walk, I know that I did it once so I know I can do it again.

I am an avid advocate, visiting DC for 3 years for Rare Disease Week and once virtually.  During the summer I participate in Rare Across America.  I have also participated in virtual Rare Advocacy Learning programs every Spring/Summer for the past several years to learn how to be a more effective advocate.  These events have allowed me to connect with my legislators to express the needs of CRPS warriors and other rare disease patients.  

CRPS has taken so much from my life, but I will not let this adversity stop me.  Instead, I find new avenues to channel my energy such as my awareness and advocacy efforts!  

I serve on RSDSA’s Board of Directors and EveryLife’s Rare Disease Legislative Advocates Advisory Committee based in Washington, D.C.  Just recently I was asked to be a part of the International Research Consortium for Complex Regional Pain Syndrome!

I hope my journey has inspired other to be their own advocate, and turn that pain into purpose!  I am so excited to be involved in the first In-Person Connecticut CRPS Awareness Roll and Stroll!