”仲間がいることを実感”　国の指定難病「魚鱗癬」患者・家族の交流会　関東で初開催

Congenital ichthyosis, a genetic abnormality designated as a rare disease by the government, causes redness and peeling of the skin. Approximately 200 people are said to be affected in Japan. A social gathering for patients and their families, previously held in Fukuoka Prefecture, was held for the first time in the Tokyo metropolitan area. First-time participants experienced the feeling of belonging. "Aozora Republic" held in Yamanashi Prefecture "Thank you for participating in the Aozora Republic." A two-day social gathering for the Ichthyosis Society was held in Yamanashi Prefecture. Approximately 30 people, including patients, family members, and medical professionals, gathered from all over Japan. Participant "I'm from Ehime. I'm 6 years old. Thank you very much." "I'm so happy to be able to participate this time, and I hope to be able to talk with you all. Thank you very much." "Congenital ichthyosis" is a nationally designated intractable disease with approximately 200 patients in Japan. Congenital ichthyosis is a nationally designated intractable disease caused by a genetic abnormality that causes the skin to turn red, harden, and peel. There is no established treatment. It is estimated that there are approximately 200 patients in Japan. It is not contagious. A Patient and Family Gathering Held in Fukuoka Prefecture for Nearly 25 Years "Welcome!" The event was organized by Chizuru Umemoto, representative of the "Ichthyosis Association," a network of ichthyosis patients and their families. For the past 25 years, all of the networking events have been held in her hometown of Fukuoka Prefecture. The decision to hold the event in the Tokyo metropolitan area for the first time was to deepen communication with patients and families who had previously been unable to attend due to distance. At first, there was very little information, so I "raised my child blindly." "Good evening," "Good evening. Welcome in." Umemoto, who lives in Kitakyushu City, raised her son, Ryo, who also has ichthyosis. Chizuru Umemoto, Representative of the Ichthyosis Association "Look, look, look, look, here's a picture of his hand. This is how it looked after surgery in Hokkaido. He was in his third year of junior high, about 13 years ago." "This is a photo of the first time I took him out of the incubator and held him in my arms." (Reporter) 26 days after birth? "Yeah. I think that was the first time I held him." When Ryo was a toddler, there was very little information about ichthyosis. The only document she could rely on was a single piece of paper. Unlike today, gathering information online was difficult, so Umemoto raised him blindly, working with doctors and nurses. "Your mother is your best teacher," they said... Chizuru Umemoto, Representative of the Ichthyosis Association: "The doctors didn't know anything either, and it was my first experience, so I didn't know either. Even when the doctor had a fever, they didn't know whether it was caused by an infection or a cold. 'First of all, your mother is your best teacher,' they told me. 'I check on you every day, so if something seems a little off, it really is. That's why you have to be your best teacher,' and I thought, 'I see.'" Realizing the Importance of Friendships Through Social Gatherings and Signature Campaigns Having often suffered alone, Umemoto organizes annual social gatherings for patients and their families. In addition, she participated in a signature campaign to receive government medical subsidies, and in 2015, ichthyosis was added to the list of "designated intractable diseases." Through her work to create a society where ichthyosis patients and their families can live comfortably, Umemoto realized the importance of friends. Chizuru Umemoto, Representative of the Ichthyosis Society, said, "There are so many things that can help us move forward by meeting and talking. That's exactly what happened to me, so I want people, including ichthyosis patients, to know that they have friends." First-time participants: Two families from Aichi Prefecture attended the first-time event at the Yamanashi event. Both families were 1-year-old girls. First-time participant A said, "We don't have any children with the same disease close by, so we decided to participate in the event hoping to share information with various people for the sake of our children." First-time participant B said, "From Aichi to Kyushu, our children are still young, and it's difficult to fly. This place is within driving distance, which is very convenient. Since it's an unknown disease and there aren't many patients, we participated in the hope of exchanging information." A valuable opportunity to discuss everyday concerns The two first-time participants interacted with patients and families of various generations, as well as specialist doctors, and discussed symptoms and everyday concerns. First-time participant B: "In the winter, my skin gets so dry that it feels like my joints ...