Carlos

Type of Porphyria

Acute Intermittent Porphyria (AIP)

A Porphyria Journey – Shared by Carlos

I serve as an officer in the Navy, and about twelve years ago, while on board a ship, I was believed to have an appendicitis attack. After surgery, however, the biopsy revealed that my appendix had not been the problem at all, it was only intestinal inflammation. At the time, I never imagined that this would be the beginning of a long journey toward a diagnosis of porphyria.

For several years, I continued experiencing symptoms similar to appendicitis, even though my appendix had already been removed. I underwent countless medical examinations for nearly five years until, finally, a remarkable Hematologist ordered specific tests for porphyria.

In 2021, my DNA test confirmed a positive result for Acute Porphyria (AIP). I did not realize then how much this diagnosis would shape the next few years of my life.

Determined to continue living normally, I stayed active practicing sports and taekwondo, working full-time, teaching, and mentoring. But despite my efforts, my body began to struggle. Between 2022 and 2024, I experienced frequent episodes, nearly one every week. It was exhausting and far from a normal life.

I tried hemin infusions several times, but they didn’t bring the relief I had hoped for. Glucose treatments were also ineffective. Fortunately, through my medical network, I was able to access treatment with Givosiran, receiving three doses that truly changed my life.

Alongside treatment, I adopted a strict nutrition plan, eliminating:

Garlic
Pepper
Foods containing resveratrol
Grapes
Alcoholic beverages
Cola drinks
Coffee
Dried fruits

Since making these changes, my health has improved dramatically. Today, I live free of symptoms. I have learned to understand my body, to listen to its signals, and to live each day with discipline and gratitude.

Porphyria has taught me resilience, patience, and the power of hope. I continue serving and supporting others who face similar challenges, always remembering that every small victory, a pain-free week, a calm day, a good lab result is something worth celebrating.

I hope my story brings encouragement and strength to others walking this same path.

— Carlos