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Claire C. | Illinois | Patient Age: 33 | Disorder: PKU

I have started to ration my formula which means I am not getting the protein equivalent I need, so my body begins to break down my own fat and muscle. This exposes me to the very amino acid I am trying to avoid – causing headaches, brain fog, anxiety, short temper, and tremors, among other symptoms. Not only does this effect my personal life and the lives of those I care about, but it effects my work life as well. I am a medical receptionist and I fear the memory issues and brain fog my level spikes cause could inhibit my ability to do my job well or, heaven forbid, cause me to make a mistake that could effect patient care and confidentiality. The longer I have to ration, the less protein equivalents I will get, and the worse my symptoms will become. If I don’t get my formula at all, I will probably have to take a leave of absence from work as the mood issues on top of the memory problems would be too much for me to tolerate and still do my job.