Meet Tamara, AIP Warrior
"The doctors told me that not only would I not return to my sporty lifestyle, but I also wouldn’t be able to walk again.”
-Tamara, AIP patient.
Before her diagnosis of acute intermittent porphyria (AIP), Tamara Paz lived an intensely active life. An accomplished athlete, she ran marathons and trained in high-altitude mountaineering while balancing academic and professional pursuits. But everything changed when her first porphyria crisis struck—leading to a harrowing medical journey marked by misdiagnoses and life-threatening complications.
“I underwent surgery twice, during which two healthy organs were mistakenly removed.”
-Tamara, AIP patient.
During early hospitalizations, doctors mistakenly removed two healthy organs, unaware her symptoms stemmed from this rare metabolic disorder. The errors didn’t end there: a 16cm subcapsular liver hematoma, caused by medical malpractice, pushed her body to the brink. By her third hospitalization, Tamara was finally diagnosed with advanced AIP—but the damage was severe. She suffered seizures, cerebral edema, and multiple ICU admissions (eight in less than 18 months). Physicians warned she might never walk again, let alone return to athletics.
Her most critical crisis erupted mid-flight during a trip to Spain in November 2022. Thanks to swift medical intervention, she survived and eventually returned home to Argentina.
Tamara reaching a summit.
Defying Expectations
Today, Tamara’s story is one of extraordinary resilience. Through disciplined care and sheer determination, she stabilized her condition, regained physical strength, and even returned to mountain climbing—reaching a summit that symbolized her triumph over pain. She resumed university studies and now lives a fulfilling life, supported by her partner and family.
A Message of Hope
Tamara’s journey underscores the dangers of porphyria misdiagnosis and the power of perseverance. Her advocacy highlights the need for rare disease awareness and proper emergency protocols.
“Every step forward—whether in recovery or up a mountain—is a victory”
Tamara’s before & after.
Want to share your story? Contact us at katri@porphyria.org
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