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Janelle M. | Massachusetts | Patient Age: 31 | Disorder: Phenylketonuria

I am a Canadian woman from Nova Scotia with classical Phenylketonuria, resulting in a severely restricted low pheneylalanine diet. Phenex-2 has been the metabolic formula I’ve relied on since infancy and the loss of this product has been incredibly stressful.

Phenex-2 accounts for approximately 93% of my daily protein intake and diet, and provides critical vitamins and nutrients. It is a lifeline for me and many other people with Phenylketonuria not only in the USA, but worldwide.

Since Phenex-2 had become unavailable I have had to try to switch metabolic formulas, unable to find another that is able to meet my nutritional needs. The stress of this has been exacerbated by the fact that shortly before the loss of Phenex-2, I found out I was pregnant with my first child. The loss of this product is a serious concern that has the potential to jeporadize the health of the people who rely on it. I am very worried about the affect this is having on my wellbeing and that of my unborn child.

I have also seen stories online of people with Phenylketonuria who have not been able to get another metabolic formula to replace Phenex-2 and their health would be in even more jeporady. Metabolic formula is critical to the management of this metabolic disorder and without it there can be irreversible developmental, physical, and mental health damage. The loss of this formula is also having a ripe effect, causing shortages of other metabolic formulas.

I am strongly urging the FDA and other stakeholders to find a way to restore access to Phenex-2 as soon as possible. The health outcomes of those with Phenylketonuria depend on it.