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I Am Glad to Know: The Importance of Carrier Screening Through the Voice of a Carrier

This Sunday, February 28th, is #RareDiseaseDay! To raise awareness and support for the rare disease community, Myriad Women’s Health partnered with Taylor Kane, a carrier for x-linked adrenoleukodystrophy, to discuss how the insights from carrier screening are essential for both patients as well as providers.

 

Taylor Kane is the founder and President of Remember the Girls, an international non-profit organization that unites, educates and empowers female carriers of x-linked genetic disorders. Taylor’s activism began as a pre-teen, after her father died from the x-linked adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease.   

“I can tell you as a carrier for ALD that I am glad to know.”

 

 

 

 

The goal of carrier screening is to identify individuals and couples who may be at-risk for passing down serious inherited conditions. Understanding one’s carrier status helps them make the right decisions for themselves and their families.

Patients have many options for how to use this information, and should feel empowered to make whatever decision is right for them and their families.

 

Here are a few ways patients may leverage this information:

 

LEARN ABOUT THE CONDITION  |  FIND A SPECIALIST  |  JOIN SUPPORT GROUPS  |  NOTIFY FAMILY MEMBERS  |  UNDERSTAND FAMILY PLANNING OPTIONS

 

 

“If my carrier status could impact how my provider manages my prenatal care, I need them to have this information. 

Taylor shares why she feels it is essential for her providers to understand her carrier status. For many individuals, being a carrier can result in symptoms or may impact how their providers manage their pregnancy, whether that be through increased monitoring or performing prenatal diagnosis. 

Most carriers are healthy individuals and don’t have a known family history of a serious inherited conditions.
Offering carrier screening to every pregnant patient is the best way to deliver consistent care and make sure you fully understand every patient’s’ prenatal risk to create an informed care plan. The Foresight Carrier Screen was thoughtfully designed to provide the most accurate, actionable insights to guide medical management decisions.  

Taylor Kane is a compensated consultant for Myriad and member of Myriad’s patient speaker bureau.