Last Updated on 9th May 2021 by Sarah and Justin
One of the goals of this journey Justin and I are on is to meet members of the international LAM community to help further connections, awareness, and research.
I’m so excited I was able to meet my first international LAM sister in Berlin! With the help of the LAM Foundation, I connected with leaders of the German group, LAM-Selbsthilfe e.V., and they helped arrange the visit.
Sina is from the Cologne area, but happened to be vacationing in Berlin last week. She was only diagnosed in February after a lung collapse but has already fully immersed herself in the LAM community and the search for a cure.
We chatted over Bier und Wein at a restaurant in Mitte. We talked about what it’s like to be newly diagnosed. I recalled how hard it was in the beginning to not think about my disease every minute of every day, but ensured her it gets better over time. I also recounted how travel helped me and Justin escape and cope – and continues to do so 6 years later. We agreed we’ve both been so lucky with all the support we’ve gotten from amazing family and friends.
We discussed the differences in medical care and health insurance in Germany and the US. We are both extremely grateful to be seeing top LAM specialists in each of our respective countries. Her experience in Germany wasn’t that much different from mine. Once diagnosed, we both found wonderful doctors quickly and feel that we are getting the best possible care.
Sina teaches English (among other things) so her English was much better than my German. Although, Justin joined us later in the evening and made a better impression with his German speaking skills. She did teach us a few things like when to use the formal “Sie” vs. the informal “du”. Being LAM sisters, she said we were “du” from the very beginning 🙂
We hope to see Sina – and other members of LAM-Selbsthilfe e.V. – when we are back in Germany this December. Until then, we’ll be connecting with others in Scotland, The Netherlands, Japan, and Hong Kong. If you’re interested in meeting up, please get in touch!
4 thoughts on “First LAM meet-up – Sina in Berlin”
It’s wonderful that you are making these meaningful connections. You, Sina and Sarah are making our global LAM community feel local! Thank you for sharing your experiences. It’s really good to hear that there are experts around the globe who understand how to treat LAM. Dr. McCormack in the US and Dr. Wirtz in Germany have collaborated for years. Now it’s your turn!
Sarah, How fortunate you both are to have such fine doctors caring for you, Dr. Jeanine D’Armiento and Dr. Monica Goldklang at Columbia Presbyterian have had such an amazing impact on your health, your treatment as well as your outlook on living with LAM – plus offering much needed support to your family. It’s marvelous for you to make all these overseas connections and learn how you can all help support each other. It’s such a small community and we do need one another.
I think it’s great that you’re able to meet others from the LAM community like this. Meeting others with my illnesses definitely makes me feel less alone.