Tori S.

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Trusting Your Inner Voice

Tori has turned her FSGS experience into advocacy, emphasizing that you are your number one support system.

Meet Tori from Pittsburgh, who lives with FSGS and is an advocate for people with RKD. Tori has a beloved goldendoodle and finds joy in beach walks and reading. When unexplained swelling and weight gain led to multiple doctor visits—including being told her symptoms were "just anxiety"—Tori refused to accept those answers. Her persistence ultimately led to an FSGS diagnosis, and by July 2024, she had a new outlook on her future. Now Tori channels her experience into advocacy, emphasizing that "you are your number one support system" and that this condition is "just as important as any other disease out there." Her journey from patient to advocate illustrates the critical importance of trusting your instincts and speaking up when something doesn't feel right.

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