Meet Lara, AIP warrior
"I began experiencing attacks. At first, I thought the pain might be related to my gallbladder. Then, in September 2022, a severe attack sent me to the emergency room."
-Lara, AIP patient.
Shortly after I was born, the sciatic nerve in my left leg became pinched, and I had surgery when I was just two months old. The surgery left me with nerve damage that affected the growth of my leg, causing it to be shorter and weaker than the other. For the first 54 years of my life, that was my biggest challenge.
I never let it define me. Growing up, I played soccer, tennis, and swam competitively. As an adult, I continued to stay active by running 5Ks, hiking Colorado's 14ers, walking the Camino de Santiago in Spain, completing a marathon walk, and doing my best to maintain a healthy and active lifestyle.
Lara with her family walking the Camino de Santiago.
In 2014, my mother became ill and was diagnosed with Acute Intermittent Porphyria (AIP). My sisters and I were tested, and that was when I learned that I carried the AIP gene. At the time, I had no symptoms. I carefully followed the recommended precautions and always informed my healthcare providers about my diagnosis.
During the COVID pandemic, I gained some unwanted weight and decided to make a change. I hired an online coach, started weightlifting, tracked my nutrition, and successfully lost 30 pounds. I felt healthier and stronger than I had in years until, suddenly, I didn't.
I began experiencing attacks. At first, I thought the pain might be related to my gallbladder. Then, in September 2022, a severe attack sent me to the emergency room. After testing my urine, doctors confirmed that I was experiencing an Acute Intermittent Porphyria attack. That was the beginning of a new chapter in my life.
Over time, the attacks became more frequent. They often occurred during activities I loved. On my third trip to Spain to walk the Camino, I experienced an attack after my very first day of walking. I had an attack while hiking Pikes Peak after reaching tree line. I even experienced one in the middle of a plane flight. These experiences forced me to confront the reality that AIP was changing what my body could tolerate.
My family and I then moved to Germany, where I have spent the last two years learning to navigate porphyria in a foreign country. In February 2026, I began treatment. The medication initially stopped my attacks for six months, which gave me hope and a sense of freedom. Although I have experienced a few attacks again in recent months, my journey continues.
Lara with her dog.
Living with AIP has required me to alter some of the activities I once loved and accepting those changes has been difficult. However, I am working to discover new interests and new ways to stay engaged with life. I have also been incredibly fortunate to have a husband who has stepped up in every way imaginable, taking amazing care of me during difficult periods and providing steady leadership for our family. I am equally blessed to have a loving family whose constant support, encouragement, and love have helped me face the challenges of this disease.
“Despite the challenges, I see a bright future ahead. This disease has taught me to look at life differently and to appreciate the many blessings I have.”
AIP is not an easy disease to live with, but organizations like the United Porphyrias Association have helped me realize that I am not alone. Through the support of the porphyria community, I have found encouragement, understanding, and a new family of people who truly understand this journey.
Lara’s story with AIP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
