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Strength – How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli

Once Upon A Gene

Strength – How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli

September 30, 2021

Strength – How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli

ONCE UPON A GENE – EPISODE 102

Strength: How We View It, Define It and How It Changes As We Move Through Life With Rare Disease and Chronic Illness – Marni Cartelli

At a time in her life that everything felt out of control, Marni Cartelli took action. She is making changes for herself and our entire community, like the upcoming October 29th #Press4Hope Challenge.

EPISODE HIGHLIGHTS

How did you come into the world of rare disease and chronic illness?

I entered the rare disease community in 2015 when I had an accident at my job as an OR Scrub. My shoulder dislocated and the pain was more severe than it should have been, even after my shoulder was back in place. Over the next year, we searched for answers for why the pain was increasing and why my shoulder repeatedly dislocated. One day my arm went blue and cold and my doctor knew what it was- a rare condition called sympathetic dystrophy (RSD) or complex regional pain syndrome (CRPS). 

What experiences left you feeling the most hopeless and defeated?

Soon after I finally had a diagnosis, I lost my job because of it. The other was through the course of fighting for treatments I needed, appeal after appeal. Going head first into advocacy was a wonderful way to connect to the rare disease community, but I did it without addressing the physical or mental challenges I was dealing with. When the pandemic hit and all my activities shut down which resulted in tremors, sweating, swelling, I couldn’t dress and struggled to feed myself. I realized I never addressed my emotions, but buried them under things to do until I started on my journey of self-reflection that I never took the time to do after being diagnosed.

What led you to choose a course of self-reflection?

I was in a place to receive the message. Sometimes we hear things and we’re not ready to hear them or take action, especially in the rare disease face. I realized I was done living my life in fear. 

What is the #Press4Hope Challenge?

The #Press4Hope Challenge will be taking place on October 29th at TCBOOST Sports Performance in Chicago. It’s a fundraising event for Uplifting Athletes where I will be lifting my max amount of weight as many times as possible in ten minutes with a goal of breaking Northwestern’s record of 6,525 pounds. I want to press over 7,000 pounds for the more than 7,000 rare diseases identified in the community. 

RESOURCES MENTIONED

ONCE UPON A GENE – Episode 095 – A Rare Collection- Skin in the Game with Adam Johnson, Nathan Peck and Marni Cartelli

https://effieparks.com/podcast/episode-095-rare-collection-skin-in-the-game

Barby Ingle

http://barbyingle.com/

Uplifting Athletes

https://www.upliftingathletes.org/

TCBOOST Sports Performance

https://tcboost.com/

CONNECT WITH MARNI CARTELLI

Marni on Instagram

https://www.instagram.com/purrr_fectlyrare/

Marni on Twitter

https://twitter.com/Purrfectly_Rare

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/ 

Once Upon a Gene on Clubhouse

https://www.joinclubhouse.com/club/once-upon-a-gene

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