「理解してくれる人は、必ずいる」皮膚の難病“魚鱗癬”の青年　幸せの日を迎えて決意

Ichthyosis is an incurable disease that causes the skin to peel off. RKB has been covering Ryo Umemoto's struggle against the disease and prejudice for over 20 years. Now 27 years old, Ryo recently met someone who understands him and got married. Ryo, who married as an ichthyosis patient, has a powerful message for his peers. ◆300 People Nationwide with a "Nationally Designated Incurable Disease" Children play energetically in the playground. They are battling a disease called ichthyosis. Due to a genetic abnormality, this nationally designated incurable disease causes dry, peeling skin, redness, and deformed fingers. Itching occurs, and the child is unable to regulate their body temperature properly, so they must frequently drink fluids. Ryo Umemoto, who cares for young children, is also dealing with this disease. It is said that there are approximately 300 people nationwide who suffer from ichthyosis. While it is not contagious, Ryo has faced considerable prejudice due to its striking appearance. ◆ "She's my girlfriend." "Really?" His friends were surprised. But at the 2022 social gathering... Ryo said, "She's my girlfriend." Participant: "Another scary thing. That came out of nowhere, you just dropped the gun." "Really? Really?" He surprised the other participants by announcing that he had a girlfriend for the first time. ◆Mother: "I never imagined it would happen" - Her son's marriage And so, in March 2023, Ryo married his girlfriend, Momoka. They now live together with Ryo's mother, Chizuru. Chizuru, who teaches Momoka how to cook home-cooked meals, said, "I never imagined it would happen." Umemoto Chizuru: "I thought I'd have to take care of Ryo for the rest of my life. It's really nice that she sees me as a normal man." Wife Momoka: "I enjoy talking about new things with my mother while I'm working, so it's a good opportunity to get closer to her." Umemoto Ryo: "It really feels like we're married. I can't really explain it, though." ◆The two of them holding hands Ryo suffers from ichthyosis. Even as an adult, his prone skin peeling remains a constant. Momoka says she sometimes vacuums multiple times a day. Momoka: "At first, I thought cleaning was a pain because I had to vacuum multiple times. Sometimes, if there was blood mixed in, I knew he wasn't feeling well." The couple cherish their weekend walks. Q: So you hold hands when you walk. Ryo: "Oh, that's right." Momoka: "Whether we're on the train, bus, or monorail, she always helps me connect. At first, it was difficult, and I didn't know where to put my hand." Q: Have you settled into a position now? Momoka: "Yes. It's something I do every day, so I'm used to it." ◆What if my child develops the disease... How his wife, Momoka, feels Since meeting Momoka, we've been able to spend more time together than I ever imagined. On the other hand, I've thought about marriage before. Ryo: "There's a 50% chance that my child will develop the same disease. I can explain everything about myself, and I'm sure they'll understand as we live together." Momoka: "I was shocked to find out that it's hereditary. I never want anyone to experience the pain of the disease again. I think the most important thing is to make sure that the child doesn't have a hard time living, so whether or not they develop the disease isn't my top priority." ◆Husband Ryo, working as a contract employee Ryo has been working in general affairs as a contract employee at a logistics company in Moji Ward, Kitakyushu City since January. His boss, Seijiro Kanemitsu, said, "First of all, we didn't really understand the disease itself, but I think we need to be a little more careful about managing his health and the room temperature. I want him to learn his job better and become independent and do his job well. Is that pressure?" Ryo: "No, I'll try not to feel pressured (laughs)." Ryo's current income, including his salary, disability pension, and Kitakyushu City special disability allowance, is about 200,000 yen. One of the reasons he decided to get married was his stable income. Ryo: "(Being able to participate in society) is a big deal. I get to interact with all kinds of people and hear all kinds of stories. It's fun, right now." ◆A Valuable Forum for Information Exchange: "Ichthyosis Meeting" This ichthyosis meeting was held for the first time in a year. Approximately 50 people, including 14 families and medical professionals, participated. The social gathering is a valuable opportunity for peers to exchange information about things that people can't talk about or ask in their everyday lives. "I highly recommend this." "That's great! Such great information." The mothers were talking about orthotics for children's finger deformities. Akiko Hayakawa: "The skin on the hands inevitably pulls on the hands, causing the fingertips to stiffen. This orthotic prevents the hands from becoming round and deformed, stretching the fingertips and preventing the deformity. If y...