Category: Personal Stories

Battling the Sharks

I have many phrases that I use to keep myself emotionally grounded.  Some of these are not likely to be statements that others would find helpful:  “It is

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Living LFS: Research with Ann

I am fairly new to LFS, by many peoples standards, only learning of my family’s genetic problem in 2011.  We all understand that this knowledge is life

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LFS in the Family

The other day in the Facebook Family and Friends Support Group, a woman from Brazil shared that while her brother tested positive for LFS, he

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Finding Support for LFS

Living with LFS is a full time job. Many of us could be awarded honorary degrees in genetics, medicine and could talk for hours about

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