Meet the incredible people who live with porphyria

Meet Selenay, VP warrior
Stories United Porphyrias Stories United Porphyrias

Meet Selenay, VP warrior

Selenay lives with Variegate Porphyria (VP), a rare form of acute porphyria that can cause both neurological attacks and skin symptoms. Discover her journey through severe pain, ICU stays, delayed diagnosis, and finding strength and hope.

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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.

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