「身近に同じ病気の人がいない、どうやって育てたら・・・」先天性の難病「魚鱗癬」　生後8か月の女の子と家族が初めて参加した「家族会」、出会った先輩パパママたちとの時間

Ichthyosis is a rare congenital disease caused by a genetic abnormality that results in red, hardened, and peeling skin. There are estimated to be around 200 patients in Japan, and an annual support group meeting for patients is held in Fukuoka. This year, an 8-month-old girl and her family participated for the first time, connecting with other patients with the same disease. Fukuoka Support Group Meeting: Approximately 50 Participants This Year Chizuru Umemoto, Representative of the Ichthyosis Association "I'm so happy to see everyone again this year. It's a pleasure to meet you all." This was at the Ichthyosis Association's support group meeting held in Munakata City, Fukuoka Prefecture, in June. Approximately 50 people, including patients and their families, gathered from all over Japan. They introduced themselves to each other. "It's a pleasure to meet you all." "I have KID syndrome. I've had severe hearing loss since birth, so I underwent cochlear implant surgery last July." What is the rare disease "Ichthyosis"? Ichthyosis is a rare congenital disease caused by a genetic abnormality that results in red, hardened, and peeling skin. There are about 200 patients in Japan, and while it's not contagious, there's still no cure. "We're currently looking for a daycare center..." A family's concerns at their first meeting Kaori Takao "Niki Takao, 8 months old, is from Fukuoka City. He has epidermal ichthyosis." This is Niki Takao and his family, participating in the exchange meeting for the first time this year. They were anxious because they didn't know much about the disease, so they decided to participate in the exchange meeting to gather some information. Niki's mother, Kaori Takao "When he was born, his skin was somewhat peeling. We're currently looking for a daycare center, and when we consulted with the teachers, they had many concerns and questions, but I couldn't answer many of them. I'd like to ask for advice on how he'll grow up and what we need to be careful about." Experiences shared by senior parents The annual exchange meeting. Participants enjoyed playing with friends they hadn't seen in a while, savoring the food, and showing smiles. Even as night fell, the gathering remained lively. Being able to discuss everyday worries is one of the great things about these get-togethers with other patients suffering from the same illness. Participant: "The itching is unconscious, so to others it looks like I'm constantly scratching, but I don't realize it myself, and it's become like a normal state." Participant: "In the summer, I can't go outside much, but my skin doesn't get that bad. In the winter, I can play outside to my heart's content, but it gets really dry." Niki's parents also actively shared their concerns. Niki's mother, Kaori Takao: "I have no idea whether I should explain it to the nursery school in advance." Then, more experienced parents shared their own experiences. A mother raising a child with ichthyosis: "Before she started kindergarten, I made a kind of instruction manual for Chihiro by hand. I drew pictures, and showed that she wears hearing aids." "She would just go to water the garden in the schoolyard and come back, and her temperature would rise to 38.6 degrees Celsius. I couldn't tell if it was a fever from a cold or just from being in the cold." A mother raising a child with ichthyosis: "That happens so much, doesn't it?" "You're not alone, you have others," she said. This helps you overcome challenges. Umemoto, the representative who herself has raised a child with ichthyosis, also spoke to Niki's family to alleviate their anxieties. Chizuru Umemoto, Representative of the Ichthyosis Association "I think you must have been incredibly worried when he was born. You must have been shocked. He was taken to the NICU right after birth, and you couldn't visit him right away. I went through that too, 30 years ago. Knowing that you're not alone, that you have so many friends, can help you overcome difficult times." "I was able to visualize how he will grow up." An invaluable two-day, one-night exchange meeting. It was a meaningful time for the participants. Participant "There was so little information, we were always fumbling our way through it. Being able to talk with everyone in this setting allowed me to hear firsthand accounts directly, and to have leisurely conversations with the doctor about things we can't discuss during consultations. It was a truly beneficial time." Niki's family also met other patients with the same illness for the first time and learned a great deal. Kaori Takao, Niki's mother: "There were so many little children there, and it gave me a good idea of ​​how they grow up. I was also able to learn a lot about daycare. I don't have anyone like that close by, and even the doctor at the hospital said he'd never seen anyone like that before. It's incredibly reassuring to know that there are others who have gone through this as she grows." ...