Eight parents took part in this Irish study, with a range of MPS disorders, aged from 6 months to 22 years, with parents interviewed at 3 points over a 17 month period. The main themes identified were described as living with MPS, the stigma of a rare condition, MPS as encompassing multiple diseases, an unknown future, hospital vs. home, the experience of waiting, a tough road ahead and things in their day to day life with MPS. Also included was the impact on their other children, the impact of their own physical and psychological well-being, and the stigma and isolation of living with a child with a rare disorder. The study highlighted the impact that a disease that is chronic, progressive and degenerative can have on all dimensions of a family's life.
Somanadhan, S. & Larkin, P. J. 2016. Article: Parents' experiences of living with, and caring for children, adolescents, and young people with Mucopolysaccharidosis (MPS). Orphanet Journal of Rare Diseases, 11 (1) P 138 -
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