Living Life to the Full – Life with Kearns Sayre syndrome

Hearing directly from patients is an essential aspect of understanding the reality of living with a rare disease. These stories provide a glimpse into the unique challenges faced by those with rare conditions, as well as their strength and resilience in the face of adversity.

EURORDIS recognises the value of these stories and is sharing them with the world to increase awareness, understanding, and support for those living with rare diseases.

Despite the challenges he faces in relation to his disability, Victor Valkov remains actively dedicated to helping other children with mitochondrial diseases and improving the world for the rare disease community.

Kearns Sayre syndrome is a neuromuscular disorder defined by ‘salt-and-pepper’ pigmentation in the retina, which can impact vision and progressive weakness of the eye muscles. The onset of symptoms typically occurs for someone with the syndrome before the age of 20.

Victor Valkov’s Story

Victor, 22, resides in Bulgaria and was diagnosed with the rare mitochondrial disease Kearns-Sayre syndrome at 14. Despite the progression of his condition and growing daily challenges, he maintains resilience and an incredible sense of humour. With the wholehearted support of his family, he persists in following the doctor’s recommendations. Victor diligently follows his mito cocktail regimen, primarily consisting of supplements and vitamins, while doing physiotherapy five times a week and swimming each weekend. He knows that his efforts have long-term benefits and tries hard to complete his daily tasks as best as he can. An optimist by nature, Victor believes that mitochondrial medicine will make a breakthrough very soon.

Victor finished high school with a specialisation in English language and is now studying Journalism at Sofia University. He is writing the final paper for his bachelor’s degree, focusing on the topic of Freedom of Speech, which has always been one of his main interests. A sociable person, Victor aspires for journalism to become his career path. His passion involves crafting articles about the many captivating places of his homeland – be it historical landmarks or natural wonders. Alongside his journalistic endeavours, he nurtures a deep fascination for mystical tales. He also firmly holds the belief that life exists beyond Earth, scattered somewhere across the cosmos. This intrigue leads him to frequent visits to Sofia’s planetarium, where he immerses himself in narratives centred around spaceships, observatories, and humanity’s remarkable accomplishments in the realm of space exploration.

Recent achievements

Last year, Victor successfully completed the Gold Level of The Duke of Edinburgh International Award, becoming the first young person with rare disease participating in the Award in Bulgaria! The Award is a global framework for non-formal education and learning, and it helped Victor to develop different skills in chess, physical endurance and volunteering. During the Award program, his volunteer work focused on contributing articles for an organisation that assists young individuals coping with various life challenges. He’s committed to helping those in need, cherishing the opportunity to make a positive impact.

In December 2019, together with his mother, father and other parents of children with mitochondrial diseases, he became a co-founder of the non-profit National Mitochondrial Disease Association in Bulgaria. The organisation is trying to raise awareness and improve the patients’ lives.

Has your life been impacted by a rare diseases? 
Share your story with us by emailing Rhiannon Walls, Communications Junior Manager, at rhiannon.walls@eurordis.org.