Cancer is tough. LFS is exponentially harder. I have always said "Whatever gets you through." For me, it has been enormously helpful to develop friendships with other mutants who can understand this life in ways that non-mutants can only guess at. My second coping mechanism has been to learn as much as I can about cancer in general, genetics and the related research that is being done, all of which could benefit my family. This is why I am excited about the work that we are starting at Living LFS.
I believe that we are empowered by the connections that we make with one another on the internet. We benefit from the emotional support that we offer and receive as we live with LFS. We help each other by sharing our experiences, the ideas of our doctors, and sometimes, even by sharing the names of the incredible physicians and facilities that we have been fortunate enough to work with. But far beyond that, I believe that we can help our community by working with the researchers who are trying to understand our wonky genetic situation. I look forward to sharing some of the ideas that I come across with you on the Living LFS site (and please share interesting things with me that you come across as well!)
I am new to LFS, compared to most out there. Our LFS story began with me and I have passed it to two of my four children, who have had 6 cancers to date. But, like all parents, I strive to prepare my children to make their way in the world, while I simultaneously try to make the world a better place for them to inherit. Working with others on Living LFS is one avenue by which I can do that, and I am excited to begin.
"Passionate about research, Compassionate with Mutants."