Last Updated on 8th January 2019 by Sarah and Justin
We got lucky with the timing of our trip to Tokyo. The last day we were there, the Japanese LAM community was holding their biggest annual meeting with both patients and doctors – the 3rd LAM Forum. They invited me to speak, which was an immense honor. Justin and I had an wonderful time attending the meeting and spending time with our host, Dr. Yoshikazu Inoue.
Japanese clinicians and researchers have been at the forefront of LAM research for many years. Dr. Inoue himself has been seeing LAM patients for decades. And we had the pleasure of meeting other leaders in the field at this meeting including Dr. Koh Nakata and Dr. Kuniaki Seyama. One of Dr. Inoue’s colleagues, Masaki Hirose, PhD graciously helped us throughout the meeting – picking us up at the subway, introducing us to everyone, and translating what was being discussed.
For many years Dr. Inoue has had a close relationship with Dr. Frank McCormack, the Scientific Director of the LAM Foundation. They worked together on the MILES trial, the clinical trial that proved that sirolimus (the medicine I take) worked in LAM patients. In fact, sirolimus was first approved for LAM in Japan, which helped pave the way for to approval in the US and other countries. At the 3rd LAM Forum, Dr. Inoue gave a talk that explained the wonderfully collaborative relationship between the US and Japanese LAM communities. Many Japanese women participated in the MILES trial and continue to volunteer for new clinical trials to help further LAM research.
Slide by Dr. Inoue
So it was an absolute honor for me and Justin to attend this event and meet so many of the doctors who contributed to me being in pretty good shape these days. I can’t believe I had the opportunity to thank them in person on behalf of myself, other women with LAM throughout the world, and the LAM Foundation.
With Dr. Inoue, Mr. Ikeda (the President of J-LAM), and Dr. Hayashida.
In my speech I told the story of my diagnosis and reflected on what Justin and I learned this summer traveling in Europe meeting different women with LAM (related in this post). After my speech, I had the opportunity to speak to a few of the patient attendees. One woman told me that it’s sometimes difficult for Japanese women with LAM to learn about their disease because their culture is to not be so open about such things, even on social media. Even though sometimes I find the current social media culture overwhelming, I do think it has helped me understand and feel better about my disease and I’m grateful for how forthcoming people are. She said how much she appreciates the LAM Forum meetings because they allow a safe space to talk about their symptoms and struggles.
After the conference, Dr. Inoue invited us to dinner at a tempura restaurant near Tokyo Station. It was a delicious feast: course after course of perfectly fried fish and vegetables.
It was also a really nice opportunity to get to know Dr. Inoue better and learn about his work. He told us about his first LAM patient, who sadly passed away from the disease. She inspired him to continue working with and searching for a cure for LAM patients and people with other rare lung diseases. The global LAM community is lucky to have him as such a dedicated leader.
In all, the day was an honor, a pleasure, and one Justin and I will never forget.