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July 19, 2023

Living Life Undeterred: Camilla's Story of Rare CMT Dominant Intermediate E (CMT-DIE)

Living Life Undeterred: Camilla's Story of Rare CMT Dominant Intermediate E (CMT-DIE)

In this moving episode of the CMT 4 Me podcast, your hosts Liz O. and Chris, a dynamic brother-sister duo, welcome a special guest, Camilla Stivenson, who shares her unique journey with CMT Dominant Intermediate E (CMT-DIE) which is one of the rarest types of CMT. 

Born in Uzbekistan and raised in Sweden, Camilla's story is one of tragic loss but highlights her positive spirit and her deep desire to live life to the fullest.  She opens up about her diagnosis with CMT-DIE and the challenges she faced growing up. From frequent falls to progressing to a kidney transplant, Camilla's experiences shed light on the realities of living with this rare type of CMT.

Despite the struggles, Camilla's optimism shines through as she shares her story with the hope of inspiring others. This episode is a testament to the human spirit's ability to persevere, even in the face of adversity.

Join us as we explore Camilla's story, discover more about CMT, and raise awareness about CMT.  Let's listen, learn, and make a difference together.


  • Camilla's personal journey from childhood in Uzbekistan and Sweden to her diagnosis with a rare type of Charcot-Marie-Tooth disease
  • A look into the characteristics of CMT-DIE, a rare form of CMT that can cause not only mobility issues but also kidney failure. 
  • Learn about Camilla's resilience and her aspiration to motivate others. Explore her journey of overcoming challenges, with specific examples that showcase the strength of the human spirit to endure during the most challenging times. 

This is an enlightening episode illustrating Camilla's journey. Listen, learn, and share her story of resilience with your community. 

  • 0:00 - Introduction and lighthearted banter among hosts LizO. Chris, and guest Camilla.
  • 0:05 - Discussion about travel plans and the hosts' desire to visit Nordic countries.
  • 0:10 - Camilla shares her background, being born in Uzbekistan and moving to Sweden at age 11.
  • 0:15 - Camilla opens up about her mother's passing due to kidney failure and being raised by her father's parents.
  • 0:20 - Revelation of Camilla's rare type of Charcot-Marie-Tooth disease (CMT-DIE) and the onset of symptoms around age 12.
  • 0:25 - Camilla's diagnosis with CMT-DIE at age 14 or 15 and the emotional impact it had on her.
  • 0:30 - Discussion about the challenges Camilla faced, including the lack of support and complicated family dynamics.
  • 0:35 - Camilla's positive outlook and her hope to inspire others through her story.
  • 0:40 - Closing remarks, encouraging listeners to tune in, share the episode, and raise awareness about CMT-DIE.

For more information about CMT and to support the CMTA, please visit www.cmtausa.org