Monday, September 19, 2016
Lina Rebeiz and her personal journey with AIP
My porphyria symptoms started right after orientation of my freshman year of college. The pain started in my lower back and quickly moved to my abdomen, and within an hour I was curled up in my bed crying. My initial thought was that this must be food poisoning, and that my Resident Advisor's suggestion to go to the ER was ridiculous. When I woke up the next day, the pain had doubled and I began vomiting uncontrollably. I went directly to our student health and wellness center, where I was given Urinary Tract Infection (UTI) medication and advised to visit the ER if my symptoms worsened.
As the pain continued to intensify, I could not believe that this sensation was humanly possible. As soon as I thought the pain had reached its absolute limit, it would double. I finally decided to go to the ER, where I waited hours before being seen, only to be told that I should hydrate and relax for my ‘UTI’ to go away. Nevertheless, because of the intensity of my pain, I was admitted to the hospital overnight while the doctors ran tests. When everything came back negative, I was sent home and told to go about my life normally. My parents, who had come to visit me while I was in the hospital, both scratched their heads at my weird symptoms. Though they are both physicians, they could not think of what could possibly be causing this misery.
After being discharged from the hospital un-diagnosed, I returned to the health and wellness center every day (sometimes multiple times a day) in the hopes that somebody would figure out what was wrong with me. I couldn’t go to the hospital because they had already discharged me without a diagnosis. The pain was too unbearable to attend class, my parents made me feel guilty for staying home to rest, and everyone considered me an over-dramatic hypochondriac. Doctors repeated appendicitis and UTI tests, and every day they would tell me again that nothing was wrong with me. When I would call my parents crying, they would insist that I should trust the doctors and just relax. Unsure of what to do, I stopped going to class altogether because standing up and walking a few feet felt like running a marathon.
Over the course of a few weeks I lost more than 20 pounds; anything I tried to consume or drink (including water) would instantly be thrown up. After a month of being told that the symptoms were in my head, I started to believe the doctors. I stopped talking to my friends because I could not explain what was wrong with me; I stopped calling my parents and just retreated into my room until I eventually started getting better on my own.
Several months later, while on winter vacation with my family, my symptoms returned with a vengeance after I started taking birth control pills. My family, convinced that I had suffered something traumatic that I didn’t want to share, insisted that I should take a break from school until I got better. I knew that this suggestion was ridiculous, and that there had to be something physically wrong with me. But without any medical evidence nobody believed me, and so we kept ignoring my symptoms.
After another two weeks, I again became malnourished -- but this time I also became delusional. My blood pressure had risen so high and my sodium had dropped so low that I suffered two seizures. During this episode, all I remember is the recurring feeling of insanity. I experienced mild hallucinations paired with strong delusions, and I always felt confused and scared. I had a constant feeling of worry, but not about anything concrete. Though it sound ridiculous now, I felt like something abstract, perhaps a monster, was out to get me.
It was during this episode that I was finally diagnosed. After the seizures, I was being treated at Tufts Medical Center, where my dad works; I am sure that without his stature as head of the otolaryngology department I would have been ignored once more. It took a whole team of doctors to figure out what was causing my symptoms; with the seizures and the PRES syndrome that followed, we finally had proof that these symptoms could not have been psychosomatic. With a stroke of luck, they sent out the test for Porphyria, and within a week the results came back positive.
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