Once Upon A Gene

The Outlet – How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy

May 4, 2023

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The Outlet – How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy

ONCE UPON A GENE – EPISODE 185

The Outlet – How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy

Chris Anselmo is an avid writer and communicator living with Limb-Girdle Muscular Dystrophy, which has undoubtedly contributed to how adaptable, resilient and compassionate he is.

EPISODE HIGHLIGHTS

What has your diagnosis journey been like since the onset of symptoms?

I have Limb-Girdle Muscular Dystrophy Type 2B and I was diagnosed at 18 years old as a result of a car accident my senior year of high school. I was getting ready to be discharged from the hospital when a doctor said routine blood work revealed my creatine kinase levels were elevated and they thought I may have suffered an internal injury they weren’t aware of. With more x-rays, they couldn’t find anything internally, but they sent me for further testing. I was eventually diagnosed with Dysferlinopathy, was told I wouldn’t have any symptoms and that I would be fine so long as I didn’t do anything incredibly strenuous. A few years later, I started developing symptoms and began to think it was the disease I had been diagnosed with years before. I saw a neurologist and received confirmation that the disease was progressing earlier than expected.

How did the reality of your diagnosis impact you?

I expected the symptoms to come much later in life, not when they did. It was a lot to handle the magnitude of the diagnosis and also the time of life that I was in, in my early twenties, living with college friends. I could imagine my friends advancing in life and their careers, getting married and having kids, buying homes and traveling, and my day-to-day was consumed with abilities I was losing. I didn’t reach out for help and I should have. I didn’t handle it well and I wasn’t the best version of myself. I was in a dark place and felt frustrated, jealous and stuck.

What helped to change your perspective and help you connect with community?

Writing for me is like what exercise is for others. It was the outlet I needed and it had become something that has helped me to process my emotions. Writing became therapy and also helped people close to me to understand what I was going through, more honestly than what I would share in conversation. What I went through was traumatic and difficult and it was important to have an outlet, to understand what was happening in a way that allowed me to take control and share my story. Writing has also helped me to connect with other people who I have things in common with.

LINKS & RESOURCES MENTIONED

ONCE UPON A GENE – EPISODE 183 – Wishing Well

https://effieparks.com/podcast/episode-183-wishing-well

Born a Hero Foundation

https://www.bornahero.org/

Rare Disease Fair

https://rarediseasefair.com/

The Muscular Dystrophy Association

https://www.mda.org/

Rare Disease Dadvocate Blog

https://rarediseasedad.com/

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