110 – How Rare Diseases Impact Carriers – Taylor Kane

May 11, 2020 twodisableddudes

After a brave fight, Taylor Kane lost her Dad to a rare disease called Adrenoleukodystrophy (ALD) when she was 3 years old.  She subsequently found out that she was a carrier of this X-linked disease.

For a long time everyone believed that “carriers don’t get symptoms.”  However, that myth has been busted and Taylor Kane has a clear mission in life.  She started a non-profit called Remember the Girls that builds support and community for carriers of X-linked diseases.  What is X-linked?  The Dudes had the same question and you’ll have to listen to find out.

As much as anything in life, Taylor Kane loves to connect with other young carriers of Rare Diseases because connecting with someone who truly understands you is “like no other.”  You can connect with her by reading her book Rare Like Us, and you can find her an Remember the Girls on social media.

Remember the Girls:
Web: https://www.rememberthegirls.org/
Facebook: https://www.facebook.com/remembergirls
Twitter: https://twitter.com/remember_girls
Instagram: https://www.instagram.com/rememberthegirls/

Website: https://www.taylorkane.com/
Twitter: https://twitter.com/taylorkane23
Instagram: https://www.instagram.com/taylorkane23/
LinkedIn: https://www.linkedin.com/in/taylorckane/

Check out Taylor’s favorite previous episode: https://n0f.88a.myftpupload.com/lipodystrophy-the-pharma-patient-relationship-andra-stratton/