Much has happened since our daughter, Amanda Staso, was featured in the Winter 2006 issue of the Quarterly. At that time, she was in eighth grade, and had just started treatment with Dr. Grant Anhalt after receiving a diagnosis of pemphigus vulgaris (PV) on her 14th birthday in February, 2006.
By the Summer of 2006, Amanda had almost tapered off the prednisone, but was still taking 2000 mg of CellCept a day. She was feeling pretty good, and was nervous, but excited to start high school. Then, in early August, she got sick. It took several doctors to figure out what was wrong, and it turned out that she had contracted the cocksackie virus. Things were confusing because this virus causes mouth sores, just like the PV. The virus resolved, but the mouth sores did not. The virus triggered a full blown flare.
Amanda was very sick. She missed her first two weeks of high school, and had to go back on high doses of prednisone and begin the long taper process all over again. What should have been a fun, exciting time in her life was consumed with physical and emotional turmoil. Physically, her face was swollen, she gained weight, suffered from migraine headaches. Emotionally, the side effects were just as bad. A very conscientious student, Amanda started high school academically behind. She felt isolated, scared, and angry. Yet, as she said in the paper she wrote in eighth grade, she lived life to the fullest, did not dwell on the negative, and soldiered on.
Amanda’s high school years have been very different than what I dreamed they would be before PV. I would never wish this disease on anyone, but I have to say that in some ways, her life is fuller, richer, and more balanced because of it. She is incredibly compassionate, perseverant, and is wise beyond her years.
Amanda is now a junior in high school, and has begun the process of choosing the path for the next phase of her life. She wants to go to college, and study either medicine or education. She takes 3 mg of prednisone every other day, and 2000 mg of CellCept every day. Side effects are minimal.
PV is something Amanda has, but it is not who she is. For her senior project, Amanda wrote, a paper entitled “The Case for Continued Public and Private Commitment to Rare Disease Research and Development” [Editor: See her paper on our website at]. Her research made us all aware that her disease is one of thousands of rare diseases, and how very lucky we are that hers is manageable and that we have the support of the IPPF to help us.
As Amanda’s mom, I never let my guard down. I mourn that her life is not care-free like a teenager’s should be. I live in fear of another flare. And I do worry about what will happen if and when she decides to have children and has to stop taking CellCept. But I take my lead from my strong, courageous daughter, try to live one day at a time, and be thankful for our blessings.
Open communication is the most important tool in managing the school situation. Each school year, I meet with all of Amanda’s teachers, counselors, and the school nurse to explain her situation and put in place mechanisms should she have to be absent for extended periods of time. Normally, a student has to miss two weeks of school before home schooling can begin. For Amanda, if she flares, the school has arranged for home schooling to begin immediately. Likewise, if she is having a minor flare, but still goes to school, I email her teachers so they know that all is not as it should be.
Not only has Amanda’s disease affected all of us my husband, son, myself, and most of all, her but it has changed the course of all of our lives. It is thanks to our extended family and friends that we have coped as well as we have. I never hesitate to ask for help. Whether it is medical research, prayers, or just a hot cooked meal, we are surrounded by a network of people who love us and generously offer their special gifts to help us through the difficult times and celebrate the victories.
Since PV is so rare among the general population, and even rarer among young people, finding a dermatologist with
experience treating it was not easy. We found Dr. Anhalt through the IPPF, and were quite willing to make the 3-hour trip from Pittsburgh to Baltimore to see him. My concern was what to do if Amanda had an emergency illness. I couldn’ go to Baltimore every time she got a cold. So I worked closely with Amanda’s pediatrician, Dr. Paul Trainer, and Dr. Anhalt, putting them in contact with each other, and with me, via email, so that we are a three-person team managing Amanda’s health.