Hi,
My name is Rachel. I have been struggling with GCT since 2005. It has been hard not having a community of other survivors of this rare illness.
I have set up a Yahoo group called Living_With_GCT. You can look it up on yahoo.com or send me a private message if you'd like to join. No personal info is required just an email address so you can receive messages. The group will be limited to women with GCT and some special guest oncologists (if they want to join).
Yahoo groups let you send a email to the group address which is then shared with everyone on the list. This way, we can share our feelings, new and old treatments, etc.. Until I can afford a website for more services, this is the best i can do.
I find it lonely having this illness and that many doctors don't even know much. However this is not the real reason i wanted to set this up. I believe that peer support is a powerful way to feel connected and supported. I hope you consider joining.
Whether you decide to join or not, blessings on your life journey and best of luck!
Rachel A.