My Personal Story
By: Yumi Suda, Japan
HIBM patient since 2000
(in picture: Yumi. Yumi, Kam and Jason in Japan.)
Hello! I'm Yumi Suda from Japan.
I was diagnosed with HIBM (also known as DMRV) 9 years ago and at that time I did not know anyone who has same disease. I felt all alone. Now I am a member of PADM (Patients Association for Distal Myopathies) and I got to know other members that I can talk to about our disease.
I had always been thinking that it would be even greater if I get to know the patients from all over the world so that we can share information worldwide. So, when I first read about ARM on the PADM website, I was very happy. It's very encouraging to have the patient’s association overseas and not only in Japan and I think there are lots of things we can learn from ARM, especially for fundraising. I think that fundraising is a very important issue for PADM.
I read the story about Kam on the ARM site and I was impressed by her courage to share her story. When I heard that she's coming to Japan, I was so excited.
It was my pleasure to meet her and Jason. They are both very friendly and fun to talk with. Kam is very open-minded, positive and has strong spirits. She's just how I'd imagined from reading her article. I always get nervous to talk to people for the first time, but this time, I was relaxed and enjoyed talking to them. I guess it was because we have something in common. I was interested how the patients are like in the States, how they live, how the government supports them, etc, so it was very good opportunity for me to ask those questions. I wished we had more time together so that I could ask her more questions :)
I have cried a lot because of my disease, but I feel it's also giving me treasures. I'm truly thankful to have been able to meet such wonderful people! It has been a great support to me. I can definitely say I'm not alone now.
I want all the patients in the world feel they are not alone. I'm sure HIBM/DMRV will be curable in the near future, so let's keep our spirits up and keep moving forward together!