Marathon Runner Diagnosed with ALS Hopes Precision Medicine Can "Brake" the Disease

(CNA, Taipei, June 24) Huang Zuo-da, 57, was once a marathon runner. Three years after being diagnosed with amyotrophic lateral sclerosis (ALS) three years ago, he now relies on a wheelchair for mobility. He even modified his car to continue working, but unfortunately, his right hand suddenly lost strength last year. Recalling the last time he held the steering wheel, his eyes welled up. He hopes precision medicine can stabilize his condition and allow him to live for another 10 years.

Huang Zuo-da attended a press conference for Global ALS Day today. He said his first unexplained fall occurred in an airport lobby. After that, he fell frequently but didn't suspect anything. It wasn't until the eve of 2022, when he wanted to join the festive crowd, that he fell several times on flat ground that day. Realizing the seriousness of the situation, he immediately sought medical attention. After repeated examinations, he was diagnosed with ALS.

Huang Zuo-da was shocked. He never imagined that he, who could run marathons, would develop ALS. He said the doctor told him to apply for a walker and a wheelchair quickly. He initially thought the doctor was being overly anxious, but two months later, the walker became necessary, and another two months later, he began using a wheelchair.

As an airport shuttle driver, Huang Zuo-da did not give up his job. He legally modified his car into a special vehicle that uses a "hand" brake. He would inform his passengers beforehand that he had mobility issues and could not get out to help with luggage. Regular customers always responded by saying it was okay and they still preferred to ride with him.

In March 2025, while driving, Huang Zuo-da's right hand suddenly lost strength. At that moment, he could only quickly raise his left hand to operate the brake together. As the vehicle gradually slowed down and stopped, he said, "I knew that was the last time I would drive." He sought the latest treatment but did not qualify for genetic testing. Recalling the scene at the time, he couldn't help but choke up.

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is a rare disease, but it is one of the relatively common types. Dr. Li Yi-chung, an attending physician in the Peripheral Nerve Department of the Neurological Medical Center at Taipei Veterans General Hospital, said that according to statistics from the Health Promotion Administration, Ministry of Health and Welfare, about 110 to 140 new ALS patients are reported in Taiwan each year, with approximately 630 current patients.

Dr. Li Yi-chung said that ALS is most common between the ages of 40 and 70. His youngest patient is 16 years old, and his oldest is 89. After the onset of the disease, motor neurons progressively degenerate, leading to generalized muscle weakness or stiffness, which eventually deprives patients of the ability to walk, speak, and swallow, ultimately resulting in complete paralysis and respiratory failure.

The course of ALS is rapid and aggressive, with an average survival time of only 3 to 5 years. Dr. Li Yi-chung stated that the average survival time for patients in Taiwan is generally better than in other countries, which to some extent reflects the more comprehensive support and care provided by Taiwanese families to patients. However, it still takes an average of 14.8 months from the onset of symptoms such as hand weakness to diagnosis. This diagnostic delay is a problem that needs significant improvement.

Many patients undergo surgery or try folk remedies in their search for the cause of their illness, thereby missing valuable treatment opportunities. Dr. Li Yi-chung believes that the prevalence of ALS in Taiwan is lower than in other Asian countries, and one important reason may be that many patients are not correctly diagnosed in time, leading to an underestimation of relevant statistics.

Dr. Li Yi-chung said that with the development of precision medicine, many drugs targeting specific ALS gene mutations have emerged internationally. These drugs can not only "brake" the progression of the disease but also potentially help patients turn their lives around and regain lost functions, enabling them to live better. He once encountered a patient whose ankle "thawed" due to a new drug. He hopes the government will relax the testing standards for ALS, allowing patients to be diagnosed and treated earlier.

Don't give up too early when facing ALS. Genetic testing is the crucial first step. Wu Shih-mei, Chairperson of the Chinese Association of Motor Neuron Disease Patients, said that patients do not need to worry about the financial burden of genetic testing. The association has been providing free genetic screening services for many years. Any ALS patient can receive this free service. She reminds patients that testing is essential and not to let any hope slip away. (Editor: Chen Ching-fang) 1150624

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