Meet Scarlett, AIP Warrior
By Scarlett Dias
"It started with severe abdominal pain, pain so intense that despite having a high pain tolerance, I knew something was very wrong."
-Scarlett, AIP patient.
My name is Scarlett. I was 23 years old when my porphyria journey began. I had just gone through a divorce and was raising two young children on my own- one was four, the other just one. I was trying to survive, rebuild, and keep going, but I was overwhelmed. Emotionally, physically, financially.
Then, the perfect storm hit. I was following a very strict no-carb diet. And I witnessed a traumatic car accident where a young girl died. That trauma, combined with extreme stress and dietary restriction, unknowingly created the conditions to bring my porphyria out of dormancy.
About two weeks later, I became very sick.
“The hospital told my mother they planned to send me to the psychiatric ward. They believed I was seeking medications.”
-Scarlett, AIP patient.
It started with severe abdominal pain- pain so intense that, despite having a high pain tolerance, I knew something was very wrong. I went to the emergency room. They couldn’t find anything and sent me home. The pain worsened. I returned the next day and was sent home again, told it was likely related to the accident. They gave me ibuprofen.
After taking it, I became violently ill. Vomiting, extreme nausea, unbearable pain. By the time my family got me back to the hospital, I could barely walk or speak. The pain was so severe that moaning was the only thing that brought even minimal relief.
For hours, I was tested while my condition deteriorated. I was passing out from pain, and no one was addressing it. Then came the devastating blow: the hospital told my mother they planned to send me to the psychiatric ward. They believed I was seeking medications. I had no history of this. It was devastating. And dangerous.
My mother refused. She told them they would not remove me from that hospital “over her dead body” until they found out what was wrong. That decision saved my life.
That’s when a physician, Dr. Har, stepped in. He assured my mother he would find the cause. He stabilized me, then went home and searched through his old medical school books. In them, he found a paragraph about porphyria. He returned immediately, ordered the test, and confirmed the diagnosis.
But by then, my body was failing. I had to be placed into a medically induced coma. My liver was shutting down. The hospital didn’t even know how to obtain the life-saving medication, hematin. They finally located it.
Scarlett finding moments of self-care even while in the hospital.
I remained hospitalized for approximately 32 days. I nearly died.
That was the beginning of years of repeated admissions. Every three to six months, I was back in the hospital for 28–32 days at a time. Doctors told me they didn’t expect me to live past 30. I lived on pain and nausea medication. My children were terrified when they visited. I was missing their lives, and they were watching their mother suffer. It was traumatic- for all of us.
I reached a breaking point. I knew I could not continue living- or dying- this way. I had already nearly died twice giving birth to my children. I had made a deal with God: I was not leaving my children early.
So I chose to change everything.
I transformed my diet, my relationship with stress, and how I lived in my body. I began exercising, practicing yoga, and doing deep spiritual and emotional healing. I worked through trauma. I committed myself to healing- physically, emotionally, and spiritually.
And slowly, things changed.
I went years without long hospitalizations. I learned how to listen to my body. I understood my triggers. I learned that this disease is not just physical; it is deeply connected to stress, trauma, and the nervous system. During difficult moments, I return to what regulates me: yoga, breathwork, sound healing. I’ve learned that rest and honoring my limits are acts of survival and self-respect.
“My hope is simple: that no other patient will have to nearly die to be believed.”
Scarlett uses sound healing to manage pain and find calm.
I am now 45 years old. Porphyria has shaped every part of who I am, but it no longer defines me.
My strength comes from my children, my boyfriend, my faith, and the people who stood by me. I’ve learned that resilience doesn’t always look like endurance—sometimes it looks like surrender, rest, and asking for help. Most importantly, I’ve learned to trust myself again. After years of being dismissed, reclaiming trust in my own body has been the most powerful part of my healing.
Today, I focus on helping others and on advocacy. I am working to bring awareness to porphyria within the medical system. I’ve written a book to help educate providers. I am advocating for changes so patients with this stress-induced disease don’t face the added trauma of the emergency room every time they need care.
My hope is simple: that no other patient will have to nearly die to be believed.
To anyone newly diagnosed: you are not imagining this. You deserve to be heard, believed, and treated with dignity. Healing is possible—not always in the way you expect, but in ways that can give you your life back.
I share my story so others don’t have to walk this path alone.
Scarlett’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
