The story of Jessica
My name is Jessica and I have Acute intermittent porphyria.
When I was twelve, I was bitten by an infected mosquito and contracted Spinal Meningitis as well as Encephalitis at the same time. During this time, I had several additional symptoms surface: hallucinations, limbs that became paralyzed for no obvious reason, severe abdominal pain, and neuropathy. These symptoms resolved once the pain medication (Morphine/Demerol) for the Meningitis and Encephalitis was decreased. Over the next several years, I experienced many more attacks with the symptoms previously mentioned.
It was not until I was 16, and as a result of a fall in the hospital bathroom, that my diagnosis became secure. While the nurse helped me return to my hospital bed, my urine sample was in the window. By the time she turned to pick it back up, my urine had turned a reddish purple. She knew exactly what to do and the doctors moved forward with getting a confirmed diagnosis and treatment.
There were many attacks and many hospitals, many doctors and nurses over the years. The emotional and financial stress impacted me and my family in unimaginable ways. As a result of my experience living with AIP, I became passionate about giving back to those who have helped me. I lost track of names of all the doctors and nurses, but I feel like I remember every one of their faces. I now work in a career field that I can give back to other patients who are living with a chronic illness. I am able to take a slice of the stress off their plate during a tremendously stressful time. Sometimes that little bit makes all the difference in the life of the patient as well as the caregiver(s). I dont get to see the full impact of my efforts as I will never meet any of the people I help, but at the end of the day, I envision each of those people with the faces of the nurses and doctors that helped me. Doing this makes having a rare disease feel more like a gift than a hinderence.