Last Updated on 8th January 2019 by Sarah and Justin
While in Australia, I was lucky to meet women with LAM and other members of the Australian LAM community.
LAM Australia Research Alliance
The LAM Australia Research Alliance is a national organization currently based in Sydney. Their goals are to fund research, support women with LAM throughout the country, and improve healthcare professionals’ knowledge and treatment of LAM. I met both founders of the organization, as well as the current president, at different times in different cities.
My friend Gill, who I met last year in Edinburgh, loves Melbourne so much that she and her husband try to visit every year (after spending a week there, we understand why!). It doesn’t always work out, but this year it did and their visit happened to correspond with ours. She arranged lunch with Heather who was one of the founders of the LAM Australia Research Alliance and is still very involved in the Austalian LAM community. We met at a typical Melbourne coffee spot and enjoyed flat whites and bagels (which were actually good – surprising to this New Yorker).
In Sydney, the LAM Foundation put me in touch with Janet, who founded the LAM Australia Research Alliance with Heather. She stepped down as President in 2015. Janet organized a lovely afternoon tea in Sydney with several women with LAM and other members of the LAM community. Us LAM ladies discussed our treatments, our symptoms, and just life in general. It’s still so comforting to talk to women who go through what I do and really understand. It was wonderful to meet Janet, Yasuko, Praveena, and Kristy. I had previously chatted with Kristy on Facebook, so it was especially nice to meet her in person.
We discussed their current research, which is done on a slightly smaller scale than that in the US and other countries in the hopes of complementing the larger work. We also talked about the treatment of women with LAM in Australia. There are just over 100 diagnosed LAM patients in Australia and only four LAM specialists. Dr. Oliver said it’s enough given the numbers, but with a country so big, I imagine it can be challenging living far from a specialist. I personally know how comforting it is that (when I’m living at home) my LAM specialists are just a subway ride away.
Also in attendance was Denise Haylen, who studied 19 women living with LAM for her PhD. Her thesis delves into the role resilience plays for women coping with and managing a rare, chronic, progressive disease like LAM. That word resonates with me so much. I myself know I’ve grown more resilient through dealing with my diagnosis and I see it in the women I meet and speak with all the time. It gives us strength. And while it’s something that comes from within, it grows with the support of loved ones and organizations like the LAM Australia Research Alliance and the LAM Foundation.
As always, it was a pleasure and an honor to meet all these different members of the Australian LAM community. Justin and I are grateful for their hospitality.