Blog Ami Hataya June 2024
Blog Ami Hataya June 2024
Personal experiences – Ami Hataya (Japan/Singapore)
Nice to meet you. My name is Ami from Japan. I’m a patient advocate at the CMTC-OVM organisation.
I was born with Cutis Marmorata Telangiectatica Congenita (CMTC) on the left side of my body and my entire left arm. As I grew up it has improved slightly to where I now have it only on my left chest and left arm from the elbow down.
Unlike in Europe, CMTC is not recognized as a rare disease in Japan, which means I have never met anyone who has CMTC in Japan and since I was a child I lived with the question of why I am different to other people.
About 10 years ago I came across this CMTC-OVM community because I was searching for other people like me. I still remember how happy and excited I was to meet other people like me for the first time at the CMTC Global Conference in the Netherlands, and how relieved I felt to know that I was not alone.
It was a culture shock to me that people my age who have CMTC have been in this community since they were very young, so they did not seem as moved as I was, but rather told me that it is normal to spend time with people who also have CMTC.
In the Netherlands, there is a system where social workers connect families with children who have the same disease, and there are many opportunities for people to be in contact with each other from an early age. I was very impressed with the standard of welfare and the government support available, it made me feel like the level of welfare in the Netherlands is decades ahead of Japan.
I feel that the CMTC-OVM community is the embodiment of the values of the advanced welfare standards in the Netherlands. I am very grateful to Lex, the founder of CMTC-OVM, for helping to improve the quality of life for people with CMTC all around the world and for giving me the opportunity to be part of this community.
I joined patient advocacy in this community because I wanted to connect with people with CMTC in Japan, Singapore, and around the world and let them know that they are not alone. I am just starting out and am still exploring, but please feel free to contact me.
In my next entry, I would like to write about my childhood experiences and thoughts.
