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Living With CMT - Julia's Story




I remember the day clearly, even though I was 4. One of my first memories was getting my first pair of leg braces after being diagnosed with Charcot-Marie-Tooth disease. This is my first childhood memory; I don’t know a life without CMT.



Introduction To Writer


My name is Julia Beron, and I am a 23-year-old graduate student in North Carolina. I grew up in Northern New Jersey before moving to North Carolina to pursue my undergraduate degree in Psychology. After earning my Bachelor’s, I began graduate school to pursue my Master of Social Work (MSW) degree! After completing my degree in May of 2024, I hope to become a medical social worker assisting those in medical crisis and adjustment to illness and continuing my advocacy work within the disabled community! My diagnosis of Charcot-Marie-Tooth Type 2e has sparked my passion for disability advocacy, accessibility rights, and the importance of mental healthcare within the community.


CMT Journey


I remember the day clearly, even though I was 4. One of my first memories was getting my first pair of leg braces after being diagnosed with Charcot-Marie-Tooth disease. This is my first childhood memory; I don’t know a life without CMT.


Looking back at my nearly 24 years, I see how CMT has impacted my life, both the good and, perhaps, not-so-good attributes of having a chronic illness. Immediately following my diagnosis in 2004, my parents immersed themselves in the best research, finding the best doctors and treatment plans, and joining the community of the Charcot-Marie-Tooth Association. Thus, Team Julia’s “Swim for the Cure” was born! As I grew up and became increasingly aware of my diagnosis, my parents introduced me to the CMT community I now call family. My diagnosis has also formed the best support system, with an extreme shoutout to my parents, Herb and Rachael Beron, and my older brother (my very best friend), Josh.


Impacting The CMT Community


My involvement with the CMTA has also greatly impacted my life and how I view having a disability. I was lucky enough to be a camper in the first year of Camp Footprint in 2016 and serve as a CMTA Youth Council member. Through my time on the Youth Council, I worked on fantastic projects and opportunities, such as co-illustrating and co-editing the Youth Communities debut book, Walk A Mile In My Braces.


As my time on the Youth Council ended, I knew I wanted to do more to give back to the community; I wasn’t close to done. Here I was, at 22 years old, wondering what was next. With the support and resources as advanced and prosperous as ever for the youth and adults of the CMTA, what about the young adults? Young adulthood is a time of self-discovery and obstacles for everyone, and perhaps even more challenging for those with a disability. After months of planning and brainstorming, the CMTA’s COMPASS was born! COMPASS is a support-based group for young adults living with CMT between the ages of 19-30


My diagnosis has made me the woman I am today and led me to pursue a career in clinical social work. My experiences as a part of the disabled community have given me a purpose so strong and clear that I can only be grateful for Charcot-Marie-Tooth for all the good it has brought into my life.


Encouragement


“You have CMT. But CMT does not have YOU. There’s a difference. Never let it have you.”

Rachael Beron.


To anyone living with a chronic illness/disability, I am here. I see you. I resonate with you. I care for you. I promise to continue to fight to make our society more accessible for you, our children, and generations to come. We will continue to fight for a cure, and I have no doubts that we will

win.



Julia Beron is a 23-year-old graduate student in Raleigh, North Carolina. After graduation in May 2024, Julia will receive her Master of Social Work degree and hopes to pursue a career as a clinical social worker assisting those in medical crises and adjusting to new illnesses. Julia is also the co-leader of the Charcot-Marie-Tooth Association’s COMPASS group for young adults living with CMT.



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