Nagisa, Turner syndrome
- Japan
I feel safe when I see that Nagisa has many good friends. She has a normal life without problems everyday...
In the words of Sachiko, Nagisa’s mother
I used to give Nagisa injections with growth hormone, before she went to sleep. But she has started to do it herself now. She has become more independent.
My concrete priority these days is to help make a law, which allows egg donorship in Japan to help women with Turner syndrome.
If we can make it legal in Japan, then Nagisa can choose herself, when she gets older. It’s very important to me that we get that law, and I speak frequently about the topic on lecture meetings and through other media.
I feel that I am working for all Turner syndrome people not for my daughter. In fact, as my daughter grows more and more independent and has less need for my moral support, I direct more of my energy towards the members of the Sunflower Club, a support group that was founded for people with Turner syndrome. I still receive on average, at least one email to my mobile-phone a day from either people with Turner syndrome or their families and I get frequent phone calls from all over the country.
The other day I got a call from a 45-year old lady. She said she had just found out, that she was born with Turner syndrome. Most Turner syndrome people drop out of the Sunflower Club, when they reach between 30 to 40 years old, but at the same time new people join.
In Japan we have a saying: “When two people share a sad feeling, it eases the pain.” This is my main function as a volunteer, when people contact me for the first time. I help ease their pain.
Later I try to provide answers to more practical questions. Some people like to have as much medical information as possible, when they talk to their doctor. For example, some people like to get information about how oestrogen works. When should you start to take it and how does it work?
Today such information varies depending on the doctor and the hospital. It would be nice to have a website, where you could check such information. Also, we still do not have a national centre for Turner syndrome patients, where they can seek help and get information. That also makes it difficult for Japan to interact with Turner syndrome groups in other countries.
