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"It gets worse and then it gets better:" Individuals’ Experiences Receiving and Adapting to a Sex Chromosome Aneuploidy Diagnosis
Speakers: Nivi Ahlawat & Jordan Richardson

In this presentation, we will give an overview of the experiences of adolescents and adults who received a postnatal diagnosis of a sex chromosome aneuploidy. Using data from interviews and surveys, we will describe individuals’ experiences receiving and adapting to their diagnosis over time. We will also discuss the role of self-advocacy and suggestions individuals provided for how the diagnosis disclosure process can be improved. This presentation may be interesting to a variety of audiences including people with an X/Y variation, their family members, and allies hoping to better understand their experiences.

Jun 24, 2021 03:00 PM in Eastern Time (US and Canada)

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