Meet the incredible people who live with porphyria

Meet Jagruti, AIP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Jagruti, AIP Warrior

Read Jagruti Sanghvi's powerful journey with Acute Intermittent Porphyria (AIP) - from misdiagnosis as a child to surviving a month-long coma at 13. Discover how she transformed her pain into purpose by co-founding the Indian Porphyria Association.

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Meet Mariana, AIP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Mariana, AIP Warrior

Mariana shares her powerful journey with Acute Intermittent Porphyria—a decade of pain, misdiagnosis, and finally, empowerment. Discover how she turned suffering into strength, founded Alas Púrpuras, and became a voice for porphyria awareness.

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Share your story!

Your story has the power to:

  • Create a sense of belonging and mutual support within the porphyria community

  • Raise awareness and understanding of porphyria among healthcare providers and the public

  • Reduce feelings of isolation and challenge the stigma often associated with a porphyria diagnosis

  • Offer hope, guidance and inspiration who may be facing similar challenges

We’re here to support you in telling your story, in your own voice. Stories will be featured on UPA’s social media channels, website, and in our newsletter.