After Yuki Kashiwagi, a popular member of all-girl idol pop group AKB48, revealed in early June that she had been diagnosed with syringomyelia, a rare spinal cord illness, public interest in intractable diseases in general heightened in Japan.
Kashiwagi, 29, recently underwent successful surgery lasting over seven hours.
In Japan, about 940,000 patients with incurable diseases are eligible for public medical subsidies, and many of them are facing employment challenges.
Some of them are reluctant to tell co-workers that they get tired easily over worries about being fired or being thought of as lazy.
A support group is calling for a broad understanding of their situation.
According to the health ministry and others, many people with intractable diseases, of which there are over 300 types, can live without major problems, depending on their symptoms.
Former Prime Minister Shinzo Abe, who suffers chronic ulcerative colitis, is among them.
There are about 500,000 intractable disease patients with disability certificates in Japan.
Patients without such certificates have difficulty getting any special support and tend to be employed under the same conditions as healthy workers.
Haruka Ikezaki, 29, who suffers chronic inflammatory demyelinating polyneuropathy, or CIDP, which causes muscle weakness and sensory disturbance, was turned down for jobs by many companies due to her illness.
“It was difficult (to get a job), as I had to say no to such working conditions as overtime, business trips or carrying heavy objects,” Ikezaki, who now works at a general incorporated association, recalled.
She does not have a disability certificate as her symptoms are unstable.
“I tried to find a regular employee position, but it was challenging (to do so) in the general quota, and I was sad about the dilemma that I’m not eligible for the quota for disabled people either,” she said.
Hiroyuki Nagayama, a 50-year-old labor and social security attorney, suffers an IgG4-related disease, which swells and stiffens organs for unknown reasons. He wants a leave system allowing patients with intractable diseases to go to the hospital.
“If I’d said at the workplace I was suffering an intractable disease, my contract could have been terminated,” Nagayama said, looking back on the three years he was employed as a dispatch worker after graduating from a law school in Fukuoka Prefecture.
“I couldn’t even take paid leave” to see a doctor, he added.
Kunio Tsuji, a 61-year-old standing director of the Japan Patients Association, which supports those with incurable illnesses, said, “For patients, work leads to social participation and hope of living.” The association stresses the need for environments in which people with irremediable diseases can work comfortably.
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