I'm Taylor Kane. When I was three years old, my dad was diagnosed with Adrenoleukodstrophy (ALD), a rare x-linked genetic disorder. Over the next two years, my dad went into a completely vegetative state and lost the ability to walk, talk, swallow, and understand what was going on around him. He passed away when I was five. Now, I'm twenty years old and a carrier of ALD. At the time my dad was diagnosed, the doctors informed my mom that due to ALD's x-linked recessive inheritance pattern, I was a carrier of the disease. They said I had a 50% chance of passing the defective gene onto any children I might have, but that I did not have anything to worry about symptoms wise. Now, less than two decades later, it is known that 90% of ALD carriers develop mild to moderate symptoms of the disease. ALD is not the only disease where carriers often develop symptoms -- there are countless others, including Hemophilia, Duchenne Muscular Dystrophy, and Alport Syndrome. Unfortunately, we are still thought to be "just carriers." There are many studies conducted on the symptoms of carriers, which makes it difficult to know what exactly to look out for or how to prevent/treat these symptoms. Carriers also face difficult choices when it comes to reproduction, and alternative options are not always covered by insurance. Two years ago, I created a nonprofit organization called Remember the Girls to raise awareness of and advocate for carriers of x-linked genetic disorders. I believe it is vital for carriers to use their voices, and for the medical and rare disease communities to understand that we are not just carriers. For more information, visit rememberthegirls.org.

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