科学｜難病コケイン症候群の姉妹の闘い / Science | The Struggle of Sisters with Kokkain Syndrome

Summary

Mikiko, who lives in Tokyo, has two daughters, her eldest, Misa, and her younger daughter, Yuka. Both have been diagnosed with Cockayne syndrome, a rare disease that causes them to age at a rate 4 to 5 times faster than normal.

The average life expectancy for those with this condition is estimated to be between 15 and 20 years, with around 100 patients in Japan. This article shares Mikiko’s experiences as she discusses her daughters’ development and her feelings at the time of their diagnosis, aiming to deepen understanding of Cockayne syndrome.

Dialogue

This dialogue is fictional and based on the article.

Log: Hey Chako, have you heard of Cockayne syndrome? It’s an incredibly rare disease. Sisters with this condition age 4 to 5 times faster. I wonder what their lifespan would be like.
Chako: Wow, they age that quickly? That’s really sad.
Log: Yeah, the average lifespan is only 15 to 20 years, which is a harsh reality.
Navi: It’s estimated that there are about 100 patients with Cockayne syndrome. It’s a very rare disease.
Chako: I see, we need to raise awareness so more people know about it!
Log: That’s true, if more people understand, there might be more support.
Chako: I want to think of ways I can help too!

Admin’s Note

This article really made me think deeply about Cohen syndrome, a difficult illness. The reality that the sisters are facing is incredibly harsh, and it raises the question of how society can support them. It’s particularly important, as highlighted by Chako’s comments, that increasing understanding could lead to more support. I feel there’s a need for more efforts to spread information about such conditions to a wider audience. I’m looking forward to future interviews as well.