Alexandria’s Story

At sixteen years old, I was a healthy and happy teenager enjoying the fun life high school had provided me. I was a member of student leadership, excelling in advanced classes, dominating on the soccer field, and loving my social life. I packed each day with as much fun and work as I could fit and never looked back, regretting wasted time. Unfortunately, this was all about to change.

In the spring of 2005 my ankles were swollen and strange markings appeared on my legs. As an avid soccer player, I assumed that I had been kicked in the shins and had rolled an ankle. I dismissed these symptoms and went on with my busy, but fun life. In the fall school began, and with that so did daily cross-country practices, followed by soccer most days. I had intense fevers, which were explained by running at high intensity for two hours in the Sacramento August heat. I was exhausted, which was explained by my extremely active lifestyle of participating in two competitive, high endurance sports. I had intense joint pain, which was explained by obvious overuse of my joints. I tried to cope with these detriments and continue my lifestyle, but eventually I could not take it. I missed school and practices, unable to explain my absence in a way other than feeling tired, achy, or sore. I could not get through one day without ending up with a high fever. I could not walk without feeling pain in my feet. I could not make it through class without falling asleep. My life had completely changed and there was no explanation to offer myself, or others who were questioning my extreme change of behavior.

My mom took me to my local pediatrician in September, who acknowledged that something was very wrong, but he did not know what. I was referred to doctor after doctor and with my mom, I would wait for the latest doctor to arrive, in the brightly lit, white-walled examining office of yet another specialist. As I lingered in yet another waiting room, I hoped that maybe this time this doctor would know what was wrong with me, but I did not get my hopes up too high to prevent setting myself up for disappointment. At the same time I was terrified, because this problem was controlling my life, and if doctors could not figure it out, who could? After the doctor arrived and we exchanged the customary handshakes and introductions, I began the story I knew too well once again: “Well, it started last spring when I noticed dark, small, raised lumps on my legs, similar to mosquito bites, except they did not itch. We ignored them, but in the fall other symptoms occurred. I became tired after the smallest tasks, would constantly have high fevers, and headaches were too frequent. I saw my pediatrician; he referred me to another doctor, who referred me to another doctor, and so on, until somehow I arrived here.”

The doctor would then proceed to ask me questions and of course, write up a blood test request so easily you would think he was reciting the alphabet. Following this routine I would arrive at yet another building titled “The Lab,” and some woman would snap on her rubber gloves, count out empty vials, and then stab my arm with a needle until she was satisfied. Following this, I would return to the previous specialist who would examine my results and say: “Well, this looks out of my league; let me refer you to another doctor.”  And so this routine went on for months until finally on December 22, 2005, I was diagnosed with Primary Sclerosing Cholangitis. I remember sleeping on the exam table when Dr. Davies walked in and five minutes after explaining my symptoms she told me I would feel better soon and she knew what was wrong. After months of feeling constricted by this over-riding shadow, that I did not know how to control, it was a blessing to hear that I was offered help, not a referral to someone else. I was desperate for an answer, and she provided me with one.

Dr. Davies, my new best friend, explained to me, “Unfortunately, there is no cure; however, I happen to be involved in a research study treating other kids like you. I can help.” Luckily for me, a doctor who lived within fifteen miles of me was one of the few doctors in the country who knew not only what this little known disease was, but could actually help treat it. Starting on that amazing day in December, I began my three times daily dose of medicine.

Days after beginning the medicine, I felt like my old self.  I had been confused, scared and frustrated for months, and these little pills instantly gave me my life back. I went back to high school after winter break and enjoyed the last year and a half with all of my best friends on the pace that I had started. I graduated high school and went on to attend UC San Diego. I played two years of soccer at UCSD; a feat I would not have been able to accomplish had PSC continued to deteriorate my lifestyle. After completing my undergraduate degree, I continued my UCSD attendance through graduate school, earning a teaching credential and my Master’s in Education. I currently work at a middle school in San Diego teaching 6th grade science and absolutely LOVE my job!  In my free time, I love hanging out with my friends and am always training for my latest race! I run half marathons mostly, but recently completed my first full marathon!  I love my life and the people in it, and without this medication I would not be able to do any of my daily activities that I no longer take for granted.  My blood results are within the normal range, and I feel incredibly better.

I will remember December 22, 2005 for the rest of my life. To me, this date is more important than my birthday, or any other day, because this is the day that I got my life back, and without that, nothing else would matter.

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