I'm a Mom looking to make a difference. I don't understand why I ended up with this genetic disease/disorder. Some days are good and don't involve medical stuff while, other days I feel like a lab rat. I have 4 kids and can't begin to know how to explain such a rare disease. My husband is supportive but even he doesn't know how to help. I just want people to understand Previvors. Also, I want to get the word out about Cowden Syndrome (PTEN mutation) which I believe is underdiagnosed.
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