Hello, I'm DeAnn and I am a founding member of Living LFS. I've been actively Living LFS since my diagnosis in 2002. Living LFS is important to me because I spent ten years after my diagnosis not knowing anyone with LFS outside of my very small family. With the limited information available back then along with the lack of community, I felt incredibly isolated and worried for my future. Living LFS has created a community of people with the same questions, concerns, and stories that I have. Through this community I have learned that LFS doesn't mean I've been given an expiration date. Over the past several years, I have developed the tools to be proactive in my screening and an active participant in my medical care. An initiative that is very important to me is consistent screening standards for everyone with LFS - regardless of age or gender. I learned that I had breast cancer in 2014, but because of rigorous screening it was found very, very early. Other members of my family haven't been so lucky because of the different screening standards practiced by their physicians. My hope for Living LFS is that we continue to foster a community and empower more people affected by this mutation to feel confident taking charge of their healthcare - especially when they may know more about LFS than their medical professionals.
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