I’m a mom and chronic illness warrior and advocate. I am a WEGO Patient Leader, Gastroparesis and Feeding Tube Advocate. I am also an Oley Ambassador.
I began having problems with my heart rate being too high as a teen. I started becoming extremely tired in May 2011 having problems with my heart rate being even higher & collapsing, especially during physical activity. I saw an Electrophysiologist and was told I had a rare form of SVT called, Sinus Nodal Re-entrant Tachycardia. To manage this I had several cardiac ablations performed, as I did not respond to the medications. I also had a pacemaker implanted at the age of 25, in February 2012.
I was diagnosed with Dysautonomia in March 2013. Due to co-morbidities, of Ehlers Danlos Syndrome, as well as Gastroparesis, I suffer severe digestive issues. As a result, I now rely on TPN for nutrition, as well as lactated ringers to stay hydrated. My journey led me to my passion, advocacy. Helping others.
I have participated in several lobbying events with the Everylife Foundation, as well as the DDNC to advocate for legislation for the rare disease and chronic illness communities. I was also a panelist at the 2021 Global Genes Patient Advocacy Summit. In September 2022, I will participate in the Patient Centricity & Collaboration Congress, where I am a keynote speaker on the topic of patient advocacy, and patient involvement in healthcare.
I have advocated for better education regarding both home enteral and parenteral nutrition (HPEN). I am active on social media, sharing my story in hopes it helps others. I am a vocal advocate for more discussion, and dialogue of self esteem, and body image issues some struggle with within the chronic illness community. I am a fierce advocate of breaking the mold, and empowering others to see their worth and beauty. I have participated in photoshoots to help promote/encourage body positivity for those with medical devices, & chronic illness.
I also strive to break the taboo blocks of mental health discussion in chronic illness. My dedication, hope and motivation led me to create Chronically Strong, a program within Living With Dys. Where I will strive to give hope, encourage and empower others to see themselves beyond their diagnosis, and to have hope for a future.
Though through this all, I’ve had the love and support of my friends and family. They have given me strength when i’ve needed it. This disease doesn’t make me less of a person, I believe it has made me a stronger person. I know I’m a good person, I know this doesn’t take away from that. It is my hope that through educating others on our daily struggles, and exactly what this disease does, we can help each other. I hope to create a community of amazing individuals that are facing chronic illness, or are a caregiver/spouse of someone with.