I was officially diagnosed with Porphyria in the early spring of 2006. I was a senior in high school and had been plagued since puberty with an "un-nameable" illness. It was a relief to finally have a name to call this thing I had inside of me. But I was also naive about what having Acute Intermittent Porphyria meant, I thought with a name would come an easy fix. And at first it did seem kind of that simple.
I had been diagnosed with all sorts of disorders and had a pill to go with them all. We quickly learned about how medication and diet was a huge contributing factor to porphyria attacks and that I was taking medication and eating things that were harmful to me. So I made big changes in my life style. I altered my medications, my eating habits, my exercise, and even the beauty and hygiene products I used. And for several years I only endured mild symptoms.
I went to college, joined a sorority, and held lead ship positions in other clubs. I had all but forgotten I had porphyria.
In 2010 I was in my junior year of college and accepted an opportunity to intern for Heifer International in Romania. It was an experience that would change my life in many ways and one that I will always cherish. I was lucky that I never got sick during my time there. I had forgotten that I had this monster waiting inside me. I had no idea that in a few short months my life would be turned upside down.
What I refer to as "The Big Attack", happened that fall shortly after I returned home. It began with feeling tingling and numbness in my extremities like everything was falling asleep. Then I would experience a sensation as if I was rapid growing and shrinking in size combined with episodes of tachycardia, I call it the "Alice in Wonderland Effect, “and it is something I've experienced often since then. I also had severe insomnia, nausea and pain that radiated all the way around my mid-section, down the back of my legs, and into left arm. I felt if you looked hard enough you could see the pain shooting in line around my body like a strand of Christmas lights. And I had pushed porphyria so far out of my mind I dint even once stop think that's what was going on until it was too late.
After being home and experiencing symptoms for over a month things were out of control the nausea and vomiting were out of control and the pain was out of this world. I was admitted to the hospital but they were unprepared to deal with my condition. Luckily my mother had the forethought to contact the APF. And with the help of Desiree Lyon was able to coordinate the proper way to administer panhematin and treat my other symptoms.
I suffered seizures, infections, paralysis of my legs, and severe cellulitis and phlebitis in my arms. I was close to death more time than I probably really care to know. I lost 33lbs in a little under two months. And I scared my family to death during this time.
Life wasn't easy coming home from the hospital either. I was angry and confused. It was like I had fallen asleep in summer and woken up in winter. We hadn't even had Halloween and suddenly it was Thanksgiving, the world had kept movie while I was standing still.
College started without me and everybody else went about their normal lives, and I was so angry and confused. I had to learn how to eat, how to walk without falling, how to brush my hair and bathe myself. I had to be able to stand for more than a couple of minutes without losing my breath or getting dizzy. I was beyond frustrated. I hated looking in the mirror, because it just reminded me of what I had lost. I didn't recognize myself, and I didn't want to be this new person. I wanted my life back, but I couldn't have it.
I battled depression, anxiety and nausea induced anorexia. I had surgeries and ports placed and life started to move again. I found joy in the thing I used to enjoy. I had an amazing support group to keep me going and I learned to not only like who porphyria made me I love her.
Being sick has afforded me an unusual perspective on life. I know not to take anything or any moment for granted. I try to savor all the happiness I can and store it up in my memory bank for when the big attacks come. That way when I'm sick and all I can do is sleep to get away from the pain, I can dream of all of you and things that make life so special. It gives me strength to fight another day.
Now when I get sick I'm more aware of my body and I'm able to call my team at my local hospital and schedule outpatient infusions. I more aware of all my triggers and I do my best to avoid them. I continue to get monthly to weekly panhematin infusions to manage my porphyria.
“The APF has helped me; my family and my doctor navigate through the complexities of proper diagnosis and treatment here in the US and abroad. Thank you APF.”