Taylor Kane is on a mission to raise awareness about what life as carriers of X-linked conditions looks like.
A couple of weeks ago, I had the pleasure to meet Taylor Kane, the founder of Remember The Girls, an organization that supports women with X-linked disorders. We met through a panel we were part of for the 2021 Global Genes Summit. We had some time to catch up and ask her some questions about her life and work as a carrier. Below are her answers:
What does having a rare condition mean to you? How has it shaped your life?
I've known I was a carrier of Adrenoleukodystrophy (ALD) for as long as I can remember. When my dad was diagnosed in 2001, we learned that since ALD is an X-linked disease, I am an obligate carrier. In high school, I learned that I myself have a very high chance of developing symptoms of the disease such as bladder and bowel dysfunction, walking difficulties, neuropathy and more. I also have a 50% chance of passing ALD on to any children I have in the future. Since ALD is in my genes, I've been rare my whole life. It's a part of who I am, and has made me a more compassionate person. I know my future may have difficulties, but I am ready to embrace them head on!
What inspired you to start Remember The Girls?
"Carriers" of X-linked conditions have long been assumed to be asymptomatic carriers, when in fact many of us do get symptoms. In the ALD community, there still isn't a lot of research on our symptoms, since boys and men are considered the primary patient population. X-linked carriers also struggle with accessing supportive doctors, affordable family planning options and mental health support. I started Remember The Girls in 2017 to bring X-linked carriers together. Even though we are from different rare diseases, we as women are all working towards the same things.
What is the biggest challenge the rare community faces?
Awareness. If people aren't personally impacted by a rare condition, such as being a patient or having an affected family member, they don't know about the prevalence of rare diseases. We need to keep using our voices to make people know that over 7,000 rare diseases exist and there are 300 million people affected - it could save a lot of people from a long diagnostic odyssey.
Where do you see your organization in 2 years? 5 years?
Now, Remember The Girls supports over 1,000 X-linked carriers. In 2 years, I hope for this to be 5,000. There are so many of us out there across 100+ X-linked conditions. We need to be connected! In 5 years, I hope Remember The Girls can help fund research into women impacted by X-linked conditions.
What advice would you give to 14 year old Taylor?
I would tell her to stay true to herself. I used to be very private about my family's rare disease journey because I didn't want to feel different. Now, I say 'why fit in when you can stand out?'.