Trusted Resources: Education

Scientific literature and patient education texts

Emotional Responses to Diagnosis of MPS or ML

key information

source: National MPS Society

year: 2020


If you or someone you know have been diagnosed with MPS or ML, a range of emotional responses may occur that are incredibly common although often varied. The following information in this is an overview of the reactions people, especially parents report experiencing. Initial responses may include relief, especially if the parent has sensed that all is not well and searched from doctor to doctor for an answer. While no one wishes for a diagnosis of MPS or ML, a diagnosis may help to alleviate anxiety, frustration and fear with the finding of something concrete. Information can be powerful, and often finding a cause for a child’s medical concerns can provide a path toward medical management, treatment, or other appropriate services.


Following a diagnosis, experiencing an overwhelming sense of devastation and progression through the stages of grief are normal. Psychologist Ken Moses has developed theories on the grieving process experienced by parents of children with disabilities. Among the most intense feeling parents of children with special needs experience is grief over the loss of their dreamed-for child. With the loss comes an intense emotional period that is often misunderstood by the individual and those around him or her. It can be helpful for those experiencing the loss to recognize their feelings and reactions as appropriate, given their situation.


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