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🇰🇷 South Korea /Health & Science

Muscular Dystrophy Patient Proposes National Center for Rare Diseases

From Hankyoreh · () Korean

Translated from Korean, summarized and contextualized by DistantNews.

At a glance

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  • Han Seong-min, a patient with muscular dystrophy, has launched a national petition calling for the establishment of a National Center for Rare Diseases.
  • He has lived with the rare disease for 51 years and faces significant challenges due to muscle weakness and complications.
  • The petition aims to improve care and support for rare disease patients, enabling them to live independently.

Han Seong-min, a 49-year-old patient with muscular dystrophy, has initiated a national petition advocating for the establishment of a National Center for Rare Diseases. Han has been battling the rare, inherited condition for 51 years, a disease characterized by a progressive loss of muscle strength due to a deficiency in proteins that maintain muscle and fascia.

Diagnosed at age seven, Han's journey has involved managing numerous complications, including respiratory failure and pneumonia, requiring him to use a ventilator since contracting COVID-19 last August. Despite facing mobility challenges since elementary school and the loss of his father in March, Han pursued higher education, earning a master's degree from Kwangwoon University's Graduate School of Information Science.

I want to live independently until the end.

— Han Seong-minExpressing his core desire and motivation for the petition.

Han's petition stems from a deep sense of responsibility as the oldest living patient with muscular dystrophy. He has witnessed many fellow patients succumb to the disease, highlighting the urgent need for better medical infrastructure. Recent tragic incidents, such as a patient being prematurely discharged from a local hospital and subsequently falling into brain death, and another dying in an ambulance due to delayed cardiac treatment, underscore the critical gaps in care for rare diseases.

The process of diagnosis and treatment for rare diseases is often arduous, involving multiple hospital visits and years of uncertainty, a journey commonly referred to as a "diagnostic odyssey." Han's petition seeks to create a dedicated national center that can streamline this process and provide comprehensive, 24-hour care, allowing patients like himself to live with dignity and independence until the end. He hopes this initiative will pave the way for other rare disease patients to find a path to self-sufficiency.

The only way to reduce the number of people dying suddenly is the establishment of a National Center for Rare Diseases.

— Han Seong-minExplaining the necessity of the proposed center.
DistantNews Editorial

Originally published by Hankyoreh in Korean. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

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