Not just carriers: experiences of X-linked female heterozygotes.

ABSTRACT:

Purpose

To better understand the needs and experiences of the X-linked carrier community to improve future recognition, diagnosis, and treatment by bringing X-linked carrier voices together.

Methods

An anonymous survey link was distributed to members of Remember the Girls, a non-profit organization for female (XX) carriers of X-linked conditions, through its website, Facebook group, Instagram, and Twitter. The survey was developed to gather data on XX carriers of numerous X-linked conditions.

Results

One hundred and fifty individuals participated in the study. The majority (81/150) of individuals learned about their carrier status by giving birth to a son diagnosed with an X-linked condition. However, over 80% (120/145) believed that they should learn this information

SUBMITTER: Choi J 

PROVIDER: S-EPMC8581108 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature