Trusted Resources: Education
Scientific literature and patient education texts
Living Through Liminality? Situating the Transitional Experience of Parents of Children With Mucopolysaccharidoses
source: Scandinavian Journal of Caring Sciences
year: 2021
authors: Somanadhan S,Brinkley A,Larkin PJ
summary/abstract:Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities.
organization: UCD School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.DOI: 10.1111/scs.13026
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