Meet Hailey, VP Warrior
“My porphyria journey began when I was on a trip to Puerto Rico visiting family. While I was there, I got extremely sick.”
Hailey, VP patient.
I'm 20 years old. I live with Variegate Porphyria (VP), a rare genetic disease that many people have never heard of. I'm queer. Most days, I carry all of these realities at once.
My porphyria journey began when I was on a trip to Puerto Rico visiting family. While I was there, I got extremely sick. That was when the vomiting started. When we got back home to Florida, I still couldn't keep food or drinks down. At that point, I also couldn't use the bathroom.
My parents took me to urgent care, where I tested positive for COVID-19 and Flu B. We later found out the flu result was a false positive, but at the time nobody knew that. I was prescribed Tamiflu, but it only made everything worse.
“I started feeling numbness in my hands. I couldn't move my fingers. I was still incredibly sick, and my urine had become dark.”
Hailey, VP patient.
I still couldn't keep anything down and my symptoms kept getting worse, so my parents took me to our local hospital. They believed it was simply a severe case of COVID. I was given so many medications that night that I still don't remember much of what happened. The next day, I was discharged. That's when things became even more frightening.
I started feeling numbness in my hands. I couldn't move my fingers. I was still incredibly sick, and my urine had become dark. My parents took me to the children's hospital in Orlando, where I was immediately admitted to the Pediatric ICU. I stayed there for over a week.
My sodium levels were dropping, along with many other important body functions. Every couple of hours I would have attacks. The only thing anyone could do was give me pain medication, and I had no idea what was happening to me.
When the doctors told me I would need to stay longer than expected, I broke down in tears. I went through countless scans and saw specialist after specialist. Nobody could figure out what was wrong. A few days into my stay, my legs began hurting even more than before. I kept telling my parents how much pain I was in.
Eventually, a physical therapist came to see me because I couldn't get out of bed. I couldn't even walk around the small ICU floor. My legs wouldn't move, and the pain was unbearable. I remember crying during physical therapy because I was so overwhelmed.
For at least a week, I was experiencing attacks every two hours. I would scream in pain. I became afraid to sleep because the attacks seemed even worse at night.
Hailey and her mother.
Finally, someone connected the dots. My sister has Variegate Porphyria, but she had never experienced an attack in her life, so nobody thought to test me. Eventually, one of the doctors worked with my sister's geneticist and decided to investigate porphyria. That's when they ordered hematin.
Looking back, that experience changed me in ways I still carry today. People often assume that being young means being healthy. They assume that if I look okay, I must be okay. They assume that rare means unlikely, and unlikely means impossible.
I've spent years explaining, defending, educating, and proving experiences that are already exhausting enough to live through. At one point, I was trapped in my own body, almost paralyzed. It's difficult to describe what it feels like to be present but unable to move, aware but unable to make others understand what is happening to you.
Hailey now.
Most people hear that story as a medical event from my past. But sometimes I think that experience never fully ended.
There is a different kind of paralysis that comes from being constantly discounted. From having doctors question your symptoms. From having family members misunderstand your reality. From watching people trust stereotypes more than your own testimony about your life.
Living with a rare disease and being queer can feel like speaking a language nobody around you understands. You learn to translate yourself over and over. You learn to anticipate disbelief before it arrives. You learn how much energy it takes simply to be recognized as an expert on your own experience.
“I often think about all the people who have had to fight to be believed. The people whose pain was minimized. The people who were told they were too young, too different, too rare, too complicated.”
Pride, for me, is not just celebration. It is insistence.
It is insisting that rare diseases deserve attention even when they affect only a small number of people.
It is insisting that young people can know their own bodies.
It is insisting that queer lives are real even when others don't understand them.
It is insisting that survival is not the same thing as being heard.
I often think about all the people who have had to fight to be believed. The people whose pain was minimized. The people who were told they were too young, too different, too rare, too complicated.
We are here.
We have always been here.
And we should not have to earn the right to be understood.
Hailey’s story with VP.
Want to share your story? Contact us at katri@porphyria.org
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