Life as a Carrier: Interview with Taylor Kane

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?'.
Life as a carrier Taylor Kane at conference

Comments

  • Posted by HARDEN SCHOLES on
    Bitcoin Scams are becoming more sophisticated and many people fall victim to them. This can be very upsetting, but don’t feel ashamed – if you’ve been the victim of a bitcoin scam or USDT scam and it’s important to report it and share it with friends and get the help you need. There is a new Agency set by the Government to help people recover their stolen funds from scammers or Bitcoin , USDT other cryptocurrency if you have ever been a victim of scam and you wish to recover your Money please visit(coinsrecoveryworldwide@gmail.com ) the genuine process to retrieve your stolen/scammed funds. Sometimes in early January I lost about £287,500 to a fake broker who promised me 100% profit on my investment monthly only to discover few days ago it was a shady investment and I became worried my money is gone until I got referred to COINSRECOVERYWORLDWIDE SERVICES by my close friend and this team was able to totally recover my stolen funds within few hours I hired them This has been the best service I ever got on the internet and this agency worth the positive recommendations they got on here… I WASNT CHARGED A PENNY ON THIS PROJECT…

    WHATSAPP[+1(347) 674-6411]
    EMAIL; COINSRECOVERYWORLDWIDE@GMAIL.COM‬

  • Posted by Devid Tukur on

    HIRE A CERTIFIED CRYPTO RECOVERY EXPERT // LOST RECOVERY MASTERS ARE REPUTABLE

    Most frequently asked question by investors after losing Bitcoins to fraudsters is how possible it is to recover the digital asset. I happened to become a scam victim last summer. I became interested in Cryptocurrency trading last summer and decided to trade $425,000 worth of crypto through an online software company which promised huge returns. This all went wrong after they transferred all my funds from my coin base wallet to an unknown wallet address. I immediately had a search out on a reliable option to recover the funds back. I came across Lost Recovery Masters, a specialized group in Cryptocurrency Recovery services. I must say I have good fortune, all my lost funds have been recovered back all thanks to these experts. To any victim who has lost Crypto to fraudsters learn more on restoring back your funds Visit their website and Learn more:
    Website: https://lostrecoverymasters.wixsite.com/recoverbitcoin2024
    Whatsapp (+44(7537)-105921)
    Support Email (Support@lostrecoverymasters.com)

  • Posted by Steve Ballmer on

    I Have At Last Located A Trustworthy Cyber Expert Who Deals With Lost Bitcoin Troubles Contact Lost Recovery Masters

    I’m Steve Ballmer and I’m thrilled to tell you about this. After being duped into investing in stolen bitcoin a few months ago, I lost all of my cash. Even though I was in a terrible situation, my despair did not last long because a coworker had told me about LOST RECOVERY MASTERS who deal with Cryptocurrency Recovery Solution. Through the assistance of Lost Recovery Masters, I was able to get back the money that had been stolen. After being informed by another bunch of hackers that my $745,000 was permanently lost, I was able to restore it. It was a huge relief, and anyone out there who unquestionably fell for this financial swindle should get in touch with Lost Recovery Masters, they will help you recover your lost or stolen funds.
    Contact them on:
    Website: https://lostrecoverymasters.wixsite.com/recoverbitcoin2024
    Email: (Support@lostrecoverymasters.com)

Leave a comment