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My Personal Story
By: Mayu, Kyoto, Japan
HIBM Patient Since 1983
Artist, Interior Designer, Jewelry Designer

My name is Mayuli Morishita Kojima, I’m a jewelry designer (I was an interior designer formerly). I live in Tokyo. I’m a patient of DMRV same as Kam. I’m a board member of PADM (Patients Association for Distal Myopathies in Japan). I was so surprised when I knew Kam is a designer for Mattel since I used to use a name of “swirl ponytail” in my private email address. It’s one of Barbie doll’s name. I often had been to Europe because I was in charg of design for Jean-Paul Gaultier Jewelry. I had many French friends, but I had no American friend. However I was charmed by Kam and these chances. I contacted Kam even though I feel like I had a problem of English. I was sure she would be embarrassed and not understand me, but we became close right away, because she was so kind, sweet and smart. From then on we maintained a good relationship with constant emails for a couple months. Finally she decided to come to Japan autumn of 2008. Because she had known there are many patients in Japan she was interested in meeting HIBM/DMRV patients same as her in Japan.

We held the two PADM’s events, in Kyoto and Tokyo. She could met and discussed with so many Japanese patients. Unfortunately I could not join them because I had to work, but I heard it was substantial from so many patients.  And one more, a deserving special mention was her lecture. My husband, Yuji is a designer too, and he is a professor for Kyoto University of Art and Design. I wanted her to speak to Japanese Design students about design career, ideas, social design, design philosophy etc… The lecture was successful. She was among so many students, and because her lecture was great they asked her a lot of questions after the lecture. In her lecture, she talked about her disease, career and her role in ARM, too. Every student were so surprised, because even though she had this difficult disease, she was so brightened, positive and encouraging and I even gained extra courage by watching her speak. After the lecture we went to Japanese restaurant in Kyoto. We talked a lot about our future while we ate the beautiful dinner. Her last day in Japan I invited her and her boyfriend, Jason to my design studio in Tokyo for homemade sushi. I’m a little bit older than kam, but my staff is almost same age as Kam and Jason. We talked about many things; about the hope for treatment and cure of our disease and the things we can do to make it happen. We would like to do welfare product’s design. We try the social design. Currently, I’m making a project of “fashionable and beautiful robotics” for patients with needs. Though Kam and I are far away from each other, we are connecting and forming a relationship of mutual trust.