The importance of being able to explain our porphyria symptoms

I began experiencing symptoms of acute intermittent porphyria (AIP) in July 2020 and was diagnosed three months later. I consider my early diagnosis a blessing, as some people with porphyria wait up to 15 years for an answer.

If AIP didn’t run in my family, I might not have been diagnosed as quickly. And without prompt treatment with Panhematin (hemin for injection) and dextrose, extreme awareness of my body, and some knowledge of AIP symptoms and triggers, I might not be alive today.

While it is fairly easy to recall an attack, it has become increasingly difficult to explain what my body goes through. Although you’d think I could easily rattle off my symptoms, I find myself struggling to say “nausea, vomiting, severe abdominal pain, confusion, diarrhea, constipation, mood swings, and seizures.” I assume this is because I live with most of them daily; therefore, they have become a normal part of my life. But being unable to recollect what my body goes through could also be a result of brain fog caused by AIP.

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Over the years, I’ve also noticed that when I explain what I’m going through, other people don’t always think my symptoms are a big deal. That has unfortunately affected my thought process and the way I describe pain. When I feel like I’m not being heard or believed, I shut down and stop trying to explain. Repeating my symptoms over and over to people who don’t understand has scarred me.

This is also why I strongly dislike going to a new doctor or the hospital. I can only imagine how frustrating it would be to spend years navigating the healthcare system while undiagnosed. Because some people do abuse medications, providers may be concerned that patients are drug-seeking, despite their tears and testimony, when every test comes back negative.

If someone has never heard of porphyria, they likely won’t understand the severity of the nausea, fatigue, confusion, mood swings, and pain we experience. Seizures should never be taken lightly, even if they are considered nonepileptic. Although symptoms such as vomiting, constipation, and diarrhea can be dangerous, people tend to understand them better because they’re visible. Seeing someone projectile vomit stomach acid for hours, despite IV medications and suppositories, does something to a person’s heart.

To help others better understand what we experience, it’s important that patients (and caregivers) feel confident in explaining what an AIP attack feels like.

I urge every patient and caregiver to write their story, whether it’s a few sentences or a novel. It’s even more important to have detailed information written down in case of an emergency. I recommend including personal information, common symptoms you experience during an attack, and chronic symptoms. It is also important to pinpoint your triggers, which can vary from patient to patient. Keep in mind that symptoms and triggers can also vary between attacks.

Regardless of how I feel on a daily basis, I am a blessed porphyria warrior, and I pray that you find peace amid the storm of living with porphyria.

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.