Nothing could’ve prepared me for the symptoms of porphyria

Growing up, whenever I’d go to the doctor with my mom, she’d inform them that she had porphyria. But even though the condition has affected several generations on her side of the family, and my mom was once hospitalized for more than three months because of a porphyria attack, our knowledge of the rare disease was minimal. Once I was diagnosed in 2020, I started doing some research and became more familiar with it.

In the five years since I was diagnosed with acute intermittent porphyria (AIP), I’ve been hospitalized over 25 times and have written a book about living with porphyria. Yet I still struggle when porphyria symptoms show up.

For a while after my diagnosis, I’d have to spend four or five days in the hospital every month, during which I received Panhematin (hemin for injection) through a PICC line. In July 2022, I had a port-a-cath placed in my chest. Although my mother-in-law had received chemotherapy through a port, I wasn’t prepared for the pain of its placement. For months after, I couldn’t wear a seat belt or a bra with straps.

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Nothing could’ve prepared me for throwing up after every meal for over three years. One of my symptoms during a porphyria attack is severe nausea and vomiting. After my hysterectomy, I couldn’t even drink water without throwing up. Thankfully, by the grace of God, that stopped a couple of months ago.

Unfortunately, I’ve always been sensitive to pain, and nothing could’ve prepared me for the excruciating pain that comes with AIP. I have chronic pain throughout my body, along with numbness and tingling. But I get the worst pain on the right side of my abdomen, where it feels like someone is stabbing me and stepping on me at the same time. During an attack, the pain is not only constant, but also difficult to manage.

For most of my life, I was an independent person who took pride in working and keeping a clean house. Nothing could’ve prepared me for the day I had to stop working because of porphyria, and I never expected to lose the urge to clean my house, let alone get out of bed some days. While this lack of motivation could be caused by multiple factors, the unbearable exhaustion that accompanies AIP has likely played a role.

Even though this condition has turned my life upside down, I’m still a blessed porphyria warrior!

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.