I am the father of daughter who was diagnosed with Arginase 1 Deficiency in 2011 at the age of 8 at our home in the UK. The symptoms that lead to that diagnosis (metabolic instability) was extremely distressing for our daughter and very upsetting for us as parents. Fortunately the ARG1D diagnosis promptly
ARG1D is a life-long condition and every ARG1D journey is different to the other. Our daughter’s journey from diagnosis to early adulthood today (in 2024), has been a challenging and difficult one for our daughter, and was an emotional and lonely one for us as parents and carers. We did not know of anyone else who had ARG1D, to reach out to for support. Gradually over time, we as parents and carers had to learn to become the experts in managing ARG1D, as a rare disease.
The Arginase 1 Deficiency Foundation has connected and established a small global community of families affected by ARG1D.
Arginase 1 Deficiency Foundation is a space where ARG1D families can connect, reach-out for help, support, and reassurance; learning from each other’s experiences; especially for families who are at the start or their ARG1 journey.
Collectively the ARG1 community can push to raise awareness and support for ARG1D patients; ultimately in the hope for effective long-term treatment and cure for the ARG1D condition.