Despite calls for diversity in the workplace and “work-style reforms” being debated in the government, Japan has yet to come up with a way to fully utilize the talent of all who wish to work, especially those with rare and incurable diseases.
Entering and remaining in the workforce is a huge challenge for them, as there are no established cures for their illnesses and their prognosis is hard to predict or control.
Jun Sakurai, a 29-year-old Osaka resident, is among a small but robust group of entrepreneurs trying to carve out a career while coping with such a predicament. They say they want to turn their medical conditions and experiences into something positive and propose unique business ideas and solutions, instead of only being on the receiving end of health care and welfare.
For Sakurai, who has battled a rare neurological disorder for more than two years, giving up one job after another due to stints in hospital has meant the only viable career option left was to set up his own company.
Sakurai founded the travel agency Sakura Star Travel in Osaka in December, aiming to meet the tourism needs of people with disabilities, including those in wheelchairs.
Sakurai said he chose tourism because that’s what he enjoys most and has expertise in. After graduating from university in 2011, he worked for a travel agency in Osaka, planning and selling tours to wealthy doctors.
But in summer 2014, when he visited a clinic for a cold, the doctor saw the way he was walking and detected something strange. A detailed checkup found that Sakurai could not walk in a straight line, tended to lose balance more easily than others and had lost reflexes in his limbs.
Soon he started tripping up on the small raised bumps on tactile tiles for visually impaired people on train station platforms. He was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare disease caused by damage to the covering of the nerves called myelin. The disorder affects only 1 or 2 in 100,000 people, with the number of patients estimated at 2,000 in Japan and 5,000-10,000 in the U.S., according to the health ministry and U.S.-based patient support group GBS/CIDP Foundation International.
By the time he entered a hospital for another long stay in November, he had quit four jobs — ranging from a tour coordinator to sales and accounting — and had endured a series of intensive inpatient therapies, including a whole-body plasma exchange.
“I spend more than half a year in hospitals,” Sakurai recently said by phone. “I spend much of my time looking out the window, wanting to see a landscape far away.”
During the latest stint Sakurai made travel arrangements to visit the Koshiki islets, three small islands in Kagoshima Prefecture, where he had never been but had planned a group tour for the wealthy doctors during his first job.
With the help of a local acquaintance, who arranged pick-ups and visits to sightseeing spots, he thoroughly enjoyed the two-day trip, he said.
“I felt so happy, being congratulated by locals I met for having overcome my conditions to travel,” he said. “I felt so thankful and felt like going there again with a friend who is in a wheelchair.”
After coming back from the tour, Sakurai, together with the friend, Keiko Ota, who has an incurable disease called Charcot-Marie-Tooth disease, decided to create a travel agency that caters to the needs of others with mobility issues. The two met at an academic conference on chronic neurological diseases last August.
Ota, a 42-year-old researcher who teaches welfare policy at a nursing school, said the two aspire to create a sustainable business model where people with incurable diseases can earn an income by themselves instead of relying on disability pensions or other financial support from the government.
Experts say there are roughly 7,000 incurable diseases in Japan. Incurable diseases are defined as those where an onset mechanism is not clear, they have no established treatment method, and they are rare and require long-term care.
Of them, 306 are shitei nanbyo (designated incurable diseases), which meet the additional conditions of patient numbers not surpassing a certain size and having an objective diagnostic standard.
About 1.5 million people in Japan have designated rare diseases, with public health care available at a reduced cost (a 20 percent co-payment instead of 30 percent).
Many of them, including Sakurai and Ota, have also been certified as physically disabled. People with disabilities are eligible for public assistance, such as disability pensions, tax reductions or exemptions, domestic help services and subsidies for welfare equipment, though the range of services available depends on the degree of their disability.
“I cannot work 30 hours a week, work five days or do overtime like other people,” said Ota, who uses a wheelchair. “I have problems with walking. But I can work from home, if I can rest when I need to. Setting up a business is possible, and I can work even at night.”
Tsutomu Kushima, a 53-year-old Crohn’s disease patient who runs a publishing company in Saitama Prefecture, agreed it makes sense for people with rare diseases to become their own boss.
For them to succeed in business, the key is to have someone else in the company who can take over when they get seriously sick, he said.
Kushima set up Mikumo-sha in 2000 with two other Crohn’s disease patients he became acquainted with through a mailing list for people with the disease, which causes inflammation of the bowels and can lead to abdominal pain, severe diarrhea, fatigue and weight loss.
The CC Japan, a magazine the company publishes every two months, is mainly geared toward the estimated 200,000 people in Japan with inflammatory bowel diseases (IBD), including 170,000 people with ulcerative colitis and 30,000 others with Crohn’s disease.
The magazine, which provides a range of feature articles, such as the latest therapies and interviews with patients who defy the statistics and thrive in whichever career they have chosen, currently has a circulation of about 20,000, according to Kushima.
“When we first started publishing the magazine in 2001, all of our staff were people with IBD,” he said.
“But we diversified our staff to include people with other kinds of diseases after all of us once wound up in a hospital at the same time.”
Kushima, who was diagnosed in the mid-1980s at the age of 23, has had serious bouts, and was hospitalized for months last year, including in an intensive care unit at one point.
He said the downside of running a business entirely staffed by people who are also patients was it could sometimes lead to a situation where nobody sympathizes with you even when you get severely sick.
“You really have to be self-reliant,” he said.
“At the same time, having consideration for other workers is important, because it’s not just you who are trying to balance life and work.”
Mari Matsunaga, 48, runs the Blau Mohn bakery in the trendy Yoyogi-Uehara district of Tokyo. A Crohn’s disease patient, she set up the shop in 2000 along with her husband, a fellow Crohn’s disease patient whom she met at a vocational school reunion.
Her petite bakery features a variety of bread, but some are “bowel friendly” types — which are low-fat, and free of additives or preservatives.
“It all started out from my need to bake bread that I could eat,” she said at the bakery adjacent to the couple’s home. “My disease requires me to reduce the intake of fat, as it can cause inflammation of the bowel system. I also must watch out for fiber. I can’t eat mushrooms or wakame (seaweed), which could cause a polyp or an ileus.”
Her love of bread-making has helped her overcome such constraints and create low-fat, trans fat-free bread that is not only healthy but tastes good.
The store is open on Fridays, Saturdays and Sundays, with Matsunaga spending the rest of her week making dough and seeing a doctor.
“The key to running a business is ensuring you love what you do. If you don’t, it won’t last,” said Matsunaga, who has worked at several companies but had to quit, due in large part to the need to make frequent toilet trips.
“Commuting was highly stressful for me, so being able to work right next to home is most important.”
Michiyo Ito, an industrial health expert and lecturer at Tokyo Health Care University, said that ideally everyone who wishes to remain employed should be able to do so.
Setting up a business should not be the only option left, as it is a high-risk career path, she said.
She said as it is, many people have been forced to quit their jobs because of their employer’s lack of understanding on the instability and unpredictability of their conditions.
But attempts by people to utilize their disease experiences should also be encouraged, Ito said, noting that more researchers were now shedding light on “stress-related growth” or “post-traumatic growth,” referring to improvements in the quality of life and mental well-being of people who have survived severe life experiences, including coping with incurable diseases.
Ito echoed the view of Kushima that, for such people to succeed in business, it’s important to have a backup system ready in case the business owner becomes sick.
“Whether that be working within a company or running your own business, the key is having someone else available to take over your job when needed,” she said.
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