Meet Jordan, AIP warrior
"The pain was almost unbearable for several months. The best way I can describe it is feeling like knives were being stabbed into my feet"
-Jordan, AIP patient.
My name is Jordan. I am 32 years old, I live in Oklahoma, and I have been diagnosed with Acute Intermittent Porphyria (AIP).
Compared to many people living with porphyria, my diagnosis came relatively quickly. I was fortunate to have an incredible neurologist in the emergency room who suggested that what I was experiencing might be porphyria while continuing to test me for everything else.
Jordan at the hospital.
My symptoms began with severe abdominal pain that doctors initially believed was related to my gallbladder.
As things progressed, I completely lost feeling in my feet and legs. By 2025, I was paralyzed from the hips down. The pain was almost unbearable for several months. The best way I can describe it is feeling like knives were being stabbed into my feet every time I put weight on them. The abdominal pain never truly goes away.
I'm due to start treatment soon, and I'm hoping it will help turn things around.
Living with porphyria has changed every part of my daily life.
Physically, the biggest challenge has been the paralysis in both of my legs. It took more than a year to regain some mobility, and while I don't always need a walker or wheelchair anymore, there are still many days when I depend on them. I can no longer drive, and that's been one of the most frustrating parts—not being able to simply go wherever I want whenever I want.
Emotionally, it has been just as difficult.
I've had to come to terms with the fact that this is now part of my everyday life. Sometimes, it's honestly scary. I also worry every morning about how I'm going to wake up feeling that day.
Socially, porphyria has created many limitations. I often worry that I'll become nauseous or simply be too physically exhausted to enjoy spending time with other people.
The hardest part has been the physical limitations and the constant fear of another attack. I worry that one day I'll end up right back where I started. Some days are better than others, but it's frustrating never knowing what tomorrow will bring.
The symptoms that stand out the most in my journey have been the paralysis, extreme abdominal pain, nausea, and vomiting.
Because of the paralysis, I've had several unnecessary falls and now have to be extremely careful with every step I take so I don't lose my balance.
Jordan’s leg with bruises.
One thing I'm incredibly grateful for is my medical team.
I've been very fortunate to have doctors who listened to me almost every step of the way. Because of them, I received my diagnosis within six months of my symptoms beginning, and they've continued helping me find the specialists and treatments I need.
Through all of this, my family, friends, coworkers, and my faith have become my greatest source of strength.
On difficult days, I remind myself that I've already survived some of the hardest parts of this journey. I try to pace myself, rest when I need to, and sometimes something as simple as lying in bed watching a funny movie or scrolling on the internet helps me relax and feel a little better.
I miss the days when I could spend 12 to 14 hours sitting at my kids' ball games, simply enjoying watching them do what they love.
There are still more bad days than good.
But I know the good days will come back.
This journey has taught me that porphyria will always be part of my life. It's a lifelong challenge, but I'm determined to face it and make the best of it. Along the way, I've discovered strength and confidence I never knew I had, and I've learned just how much I'm capable of overcoming.
“This journey has taught me that porphyria will always be part of my life. It’s a lifelong challenge, but I’m determined to face it and make the best of it.”
Jordan’s story with AIP.
Want to share your story? Contact us at katri@porphyria.org
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