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2023 Family Conference Welcome DAY 1 36, Prader-Willi Syndrome Association | USA

What is Disenfranchised Grief and How Can PWSA | USA Offer Support?

Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW

Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. But what about the feelings of loss associated with living with PWS? Is this a grief individuals feel when they are faced with a loss of freedom or independence? Is it grief individuals experience when they can’t reach their personal goals, when they can’t have a family of their own, or when they can’t own and drive a car? Yes. These are all examples of disenfranchised grief.

Disenfranchised grief is grief experienced when a loss occurs that is not openly acknowledged, publicly mourned, or socially supported. Any loss one experiences that is not commonly experienced by others can lead to disenfranchised grief.

It is not uncommon for people with PWS to experience grief throughout different stages of their life. PWSA | USA offers support to those experiencing disenfranchised grief. Over the past few months, we have provided support to numerous individuals with PWS, between the ages of 8- and 50-years-old, who are working through disenfranchised grief. If your loved one is experience a sense of loss or you believe they could use additional support related to PWS, please contact one of the family support counselors at 941-312-0400.

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