The inspirational journey of a woman diagnosed with a rare type of Charcot-Marie-Tooth disease (CMT) is being shared on the CMT 4 Me podcast. Hosts Chris and Liz O. recently interviewed Camilla, who opened up about her challenges and triumphs living with CMT in Sweden. Her story exemplifies perseverance and maintaining a positive outlook despite hardships.
Camilla revealed she has CMT Dominant Intermediate E (CMT-DIE) , one of the rarest forms of the neurological disease. This rare type affects only about 16 people worldwide and involves a genetic mutation that can also lead to kidney disease. Tragically, this kidney disease took Camilla’s mother’s life when Camilla was just two years old. She was subsequently raised by her paternal grandparents in Uzbekistan.
At age 11, Camilla’s life was upended when she moved to Sweden with her father and stepmother. Leaving behind her beloved grandmother was incredibly difficult. Camilla recalled watching her grandmother crying while waving goodbye, an emotional moment seared into her memory. Unfortunately, her relationship with her new family was tumultuous. She described her stepmother as abusive, even mocking Camilla’s limited mobility from her emerging CMT symptoms.
Feeling neglected and betrayed, Camilla left home at only 15 years old. She found refuge with a Swedish couple who provided a safe, stable environment. However, she still had to begin working to support herself rather than finishing school. It wasn’t until later in her twenties when she became a mother that Camilla returned to her studies, determined to build a better life.
Her CMT diagnosis came at age 14 after developing foot drop and other issues. The news was terrifying, leaving Camilla worried about ending up in a wheelchair. She experienced shock, fear, and self-consciousness about her evolving gait. Sadly, Camilla had no one to confide in during this challenging time. But focusing on her abilities rather than limitations helped her press forward.
In her early twenties, Camilla’s kidneys began deteriorating rapidly due to the associated genetic disease. After giving birth to her daughter she quickly progressed to needing dialysis. Camilla described the painful treatments and how difficult it was caring for a new baby while coping with fear and depression. Her steadfast husband and her sheer will to live kept her going. After 11 arduous months, she underwent a successful kidney transplant.
Throughout her interview, Camilla exuded grace, optimism and wisdom. She emphasized that “your self-doubt can be more of a limitation than any diagnosis you have.” Camilla also shared the importance of accepting yourself and not being ashamed, proudly proclaiming: “I’m unique and I’m me.”
She movingly expressed a desire to pass these values onto her daughter, along with instilling strong self-esteem and confidence. Camilla also hopes to emulate the unconditional love and encouragement her late grandmother provided. Tragically, she lost this matriarchal figure last year and still grieves her absence. However, her grandmother’s positive influence is ever present.
Camilla shared advice for others struggling with CMT, counseling them to focus on their abilities and take small steps forward each day. She emphasized the power of mindset, saying “I choose to look positively at it.” Camilla recognizes the challenges ahead with her disease progression but intends to meet them with the same grace and grit that has guided her thus far.
Chris and Liz O. produce the CMT 4 Me podcast to share inspirational stories like Camilla’s. They aim to foster community, educate others about the realities of living with CMT, and empower those on their own journeys. This podcast provides a platform for open dialogue and mutual support around topics not often discussed publicly. To hear more, find CMT 4 Me on Facebook, Instagram, Apple Podcasts, Spotify or wherever you listen.
