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Acute Intermittent Porphyria (AIP)
I was diagnosed with Acute Intermittent Porphyria (AIP) at the age of 27, after years of various medical issues and numerous exploratory surgeries. My mother was also diagnosed with AIP during my childhood. She discovered her condition while hospitalized for an acute attack. A physician placed a sample of her urine in sunlight, and when it turned red and purple, he diagnosed her with a rare form of acute hepatic porphyria. The doctor explained that her type of AIP was a mutant form and would not be inherited by her children.
Throughout my adulthood, I consistently informed my doctors about my mother's AIP and her kidney damage caused by the condition. I also mentioned that her physician had assured her that her type of AIP was not hereditary. Despite this, no one considered further testing for my case. In the early 1990s, while awaiting yet another surgery, a physician decided to refer me to a DNA specialist to test for AIP. The test result was positive, which helped clarify many mysteries surrounding my health. Unfortunately, I had already been prescribed numerous medications that were contraindicated for individuals with AIP. It remains unknown how much damage those drugs may have caused to my organs, which were already affected by porphyria.
One positive aspect of my diagnosis was the start of my treatment with hematin. The use of hemin made a significant difference in my life. At the first sign of an attack, I would be hospitalized to receive D10 IV fluids and, as needed, several days of hematin infusions. This became my routine—managing treatments while also managing my symptoms. During this time, I was busy raising four children while my husband traveled for work. Life took a drastic turn when I lost my firstborn son in a tragic accident at the age of 21, followed by a divorce a year later. I found myself juggling a full-time job alongside raising three teenagers. The stress during this period was immense, and so were the flares of my porphyria. I was frequently hospitalized due to increasingly severe attacks.
By 2006, my porphyria had become unmanageable. I was hospitalized for over two and a half months, and I have little recollection of that time. My recovery took many months, during which I had to undergo rehabilitation and relearn how to walk. By 2015, my body began to seriously shut down. I was placed in the ICU during hospitalizations due to my body's response to treatment. I could no longer tolerate the only existing treatment for porphyria. During my last hospitalization, my platelet count dropped to 10, necessitating blood transfusions, a bone marrow biopsy and other treatments that left me drained and weak. My physicians concluded that I would no longer receive that medicine.
Due to the severity of the disease and the complications of the symptoms, I began the extensive evaluation process for a liver transplant in 2009, which is the only known cure for AIP. I pursued the transplant path for one year but was ultimately declined. In 2015, I was considered a candidate for a new drug in clinical trials; however, due to my inability to receive hematin, I was not eligible and had to wait for FDA approval.
I was referred to UCLA for liver transplant evaluation in 2022-2023. I was declined due to the availability of Givlari to control the disease. In 2023, I had my first and only injection of Givlari, but I had a terrible response to the medication. I felt as if my brain was not functioning properly and all I wanted to do was sleep. Nonetheless, I managed to take care of daily tasks, such as cooking and caring for my 13-year-old grandson, Ryan, whom I am raising. I now experience constant flares and self-treat each attack. I have a fulfilling life and refuse to let it pass me by. I stay as active as possible and rest whenever I need to. There are times when I have to scale back my activities and focus on self-care, and I do a very good job of that!
About Me
I raised four children and have seven grandchildren whose ages range from 24 down to five-year-old twin girls. Currently, I am raising my 13-year-old grandson, Ryan. I have worked as the Director and Kindergarten teacher at a private preprimary academy and as a Certified Sales Professional for Shea Homes. I have studied and obtained certification in NLP and pursued college-level coursework in Psychology and Religion. I attended Chico State to study religion and am currently working on my master’s degree in Consciousness Studies.
For the past ten years, I have been a licensed Practitioner at the Center for Spiritual Living in Temecula Valley. In my spare time, I enjoy camping, reading, writing, studying, and spending time with family and friends. My favorite activities include going on camping adventures in nature with my family, traveling, gardening, and creating art.
