Running Philly for rare disease. Nov. 21. Donate

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Last updated October 22, 2026.

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Not medical advice

I’m a patient, not a medical provider. Nothing here is medical advice. Talk to your care team before changing your treatment.

That includes my books, the free guide, my videos, the blog, and 1:1 support. They share lived experience, not diagnosis or treatment. If you think you may be having a medical emergency, contact your care team or local emergency services.