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Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with porphyria and that others have been in your shoes. Here’s a collection of columnist Claire Richmond’s words that we would like to share to help guide, inspire, and encourage you.

Unexplained Pain and My 19-year Search for Answers

Claire had her first acute intermittent porphyria attack when she was 14 but wasn’t diagnosed until she was 33 years old. Here she describes what it is was like to go through that experience and how finally having an answer to her unexplained pain took a huge weight off her shoulders.

 

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How Assembling Care Providers Is Like Cooking a Delicious Soup

Claire discusses her experiences assembling a team of health practitioners to help her manage her acute intermittent porphyria. Much like soup needs a good recipe and prep work, so does gathering a team of care providers.

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3 Ways I’m Reclaiming My Joy While Living With Hepatic Porphyria

Like many with a chronic condition, Claire sometimes struggles with her mental health, but she has found a few ways to channel her negative thoughts and reclaim her joy. Step one? Faking happiness.

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Turning Toward Pain and Learning From Adversity

Having a chronic condition like acute intermittent porphyria is challenging in many ways, but Claire is learning to turn toward her disease in gratitude for what it has taught her and to find peace with her body.

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