Sarah Polykov

Type of Porphyria

Acute Intermittent Porphyria (AIP)

My Journey with Acute Intermittent Porphyria, Sarah Polykov

My day job is as a life coach, and I’m also a trained psychologist. I’ve spent my career helping people navigate personal and emotional challenges, but nothing has shaped my understanding of resilience, courage, and perseverance quite like my own journey with acute intermittent porphyria (AIP).

It started long before I ever had a name for it—long before any of us did.

My grandmother was the first in our family to suffer from what we now know is acute intermittent porphyria. She lived her entire life in Missoula, Montana, in a time and place where access to specialized medical care was limited, and the language for invisible illnesses even more so. What we saw was a woman in chronic pain: debilitating abdominal attacks, severe constipation, and an intense sensitivity to sunlight. She never left the house without a wide-brimmed hat, gloves, and often an umbrella—no matter the season. To outsiders, it may have looked eccentric. To us, it was normal.

She never complained. My grandmother was a God-fearing woman, a Sunday school teacher with a fierce love for her family and a quiet dignity that made her suffering invisible to most. I believe prayer and faith were her medicine when doctors had none to offer. Her strength was both a shield and a mask.

My symptoms began when I was just 13.

It was sudden and cruel: waves of excruciating visceral pain that came out of nowhere and didn’t let up. I missed half a year of school. Pediatricians, grasping at straws, suggested it was psychosomatic—maybe a teenager trying to skip school. But I wasn’t trying to escape responsibility. I was trying to survive something I didn’t yet understand.

As I moved into adulthood, the pattern solidified. The pain returned predictably—around my menstrual cycle—each month a cruel echo of the last. My parents, having no better explanation, labeled it a “nervous stomach.” It was the best they could do with the information they had, and like my grandmother, I gritted my teeth and got through it.

When I met my husband, he was a medical resident, and I was a corporate executive still navigating monthly flare-ups of this mystery illness. By then, I had learned to avoid alcohol because it triggered my episodes, and I lived off a steady stream of carbohydrates and sugar to keep the pain at bay. On one ski trip early in our relationship, he saw firsthand what a full-blown attack looked like—and from that moment on, he made it his mission to help me find answers.

Over the years, I endured countless endoscopies, colonoscopies, and stomach biopsies. I saw neurologists and gastroenterologists. One neurologist did suspect porphyria—but lacked the tools or tests to confirm it. Then came one of the darkest chapters of my journey. 

One doctor, unable to find answers, decided I must be severely depressed and recommended electroconvulsive therapy (ECT). I underwent ECT and was given a paralytic—but I stopped breathing. Still, no one had connected the dots.

Then, one night, what felt like a miracle happened. We arrived at an ER where a doctor on duty just happened to be an expert in acute intermittent porphyria. He even had a book with him on the condition. That night, another patient was also experiencing a porphyria crisis, and the hospital had only one vial of heme—used to treat AIP—left in stock. Since it was needed for the other patient, the doctor treated me instead with several doses of lorazepam and IV bags of D10 (a glucose solution). I felt like a new person. For the first time, we had a name for the thing that had haunted me for decades.

But as many rare-disease patients know, the diagnosis was just the beginning of a new kind of battle.

Not all hospitals carry heme. Even worse, many doctors dismiss or overlook AIP, despite the fact that it’s clearly listed in my medical record. Time after time, I’ve had to advocate for myself, repeating the same explanations in the middle of excruciating pain. 

One doctor almost gave me a clot-busting drug for a stroke—something that would have been deadly in my case. Others have insisted on working me up for a heart attack before considering AIP, even when my history was right in front of them.

One of the scariest moments came when a doctor prescribed progesterone to treat perimenopause, not realizing it was a major trigger for AIP. My husband, who knew exactly what was happening, told the ER staff what I needed—immediate glucose therapy—but they refused. I stopped breathing that night. I had a near-death experience and communed with God and angels. It was a night to remember. 

Thankfully, since then, my family doctor has been a true ally. He helped me obtain an emergency kit that doesn’t cure an attack, but buys me precious time while I make it to the hospital and begin advocating for the correct treatment. 

For me, quick intervention is critical—paralysis can set in within hours. I’ve had 22 different episodes of left-side paralysis. Each time, I’ve had to pray my way through the fear, leaning into faith while getting treated for a flare-up. Prayer has been essential in addition to medical care. 

Today, I’m a mother of two sons and have my wonderful and supportive (MD) husband who understands this journey more than most and who has been on this journey with me since we dated. 

Thankfully, my family has learned how to support me during flare-ups, and I take careful measures to avoid triggering them. I don’t drink. I don’t take recreational drugs. I always check new medications against the porphyria drug safety database—a habit I began after that terrifying incident with progesterone.

My diet is high in carbs and sugar, and I don’t restrict calories. This has been hard to see how my body has changed. Once upon a time, I had 15% body fat and was a weight lifter. Sometimes I feel tremendous amount of shame because of the weight gain associated with high carbohydrate intake. Sometimes it takes a real toll on my self-esteem and frankly, I feel helpless since calorie restriction can bring on an attack of AIP. Fortunately, my husband has been very understanding and has never contributed to these feelings. 

I walk for exercise and swim when possible. Adequate sleep is non-negotiable, and I do everything I can to keep my stress levels low. I have also found that spending time in clean salt water, such as the oceans in Hawaii are specifically very healing to my body because it’s a stress reliever. When I can’t be in salt water, I like to take baths with a dead sea salt and magnesium mixture. These warm baths tend to help with my personal stress levels. Of course, every body is different and this is just my personal experience. 

Perimenopause has been a roller coaster, but it feels like the worst is behind me. The attacks still come, but not as frequently, and I’m working hard to avoid permanent nerve damage. 

My hobbies have become lifelines. I am a trained singer and songwriter, and creating music keeps my spirit lifted. I’m also a visual artist and love painting large abstract pieces in the art studio I’ve set up in my garage. These outlets are not just creative—they are essential to my emotional well-being. I have noticed that emotional well-being is also a key for me in my personal journey. 

Living with AIP means living with some vigilance. But, on the flip side, it also means choosing joy and gratitude for what is going right. My faith in God is the foundation that keeps me grounded. I do not believe I could walk this path without it.

Thank you for reading about my AIP journey Beautiful souls, I wish you the best on your journey. 

Sarah is a song writer and musician. Here is her song about her Porphyria Adventure On YouTube and Spotify. MY CHAMPION IS ME