In this interview, Marie Discenza, MS, CGC, speaks with Taylor Kane, founder of Remember The Girls, an organization that helps provide community and support for carriers of X-Linked disorders.
Marie: What was your inspiration for starting Remember The Girls?
Taylor: In 2003, my dad, Jack, was diagnosed with a rare X-linked disease called Adrenoleukodystrophy (ALD). ALD is a neurodegenerative brain disease that has no cure and my dad passed away when I was in kindergarten. At the time of his diagnosis, I was identified as an obligate carrier of the condition, because all men with X-linked diseases will pass their affected X chromosome to any daughters they have. Growing up, I was always told that ALD would not really affect my life until I wanted to have children since I am “just a carrier.” However, when I got to high school, I learned that many carriers of ALD do develop some symptoms of the disease, but these were not really being discussed or researched. I learned that this was the same for many other X-linked conditions, and women were considered to be “just carriers” despite being impacted by the condition physically, emotionally, socially, and financially. It was due to this realization that I founded Remember The Girls in 2017. (It’s) the first non-profit organization to support females impacted by X-linked conditions.
M: What advice would you give to someone who was recently identified as a carrier for an X-linked condition?
T: The advice I would give is to turn to online support groups, like Remember The Girls, and to meet other women with similar experiences. When I got to high school and got a Facebook page, I joined groups for ALD carriers and even started my own for carriers under the age of 30. I cannot imagine what my life would be like had I not connected with other carriers in the ALD and X-linked communities. I know that if and when I do go through family planning and or develop symptoms, I will have a community of women to turn to.
M: How has creating a community brought you strength and support?
T: Remember The Girls is a community of almost 1,000 X-linked carriers around the world. It has been amazing seeing so many women from different disease groups and backgrounds come together and bond over something that affects all of us. There is power in numbers and I know that by teaming up and working together, our group will do amazing things!
M: What do you wish people knew more about female carriers? How can healthcare providers be good partners to you?
T: I wish people understood that being a “carrier” of a genetic disease does not necessarily mean you do not have symptoms. As for ALD, studies show that over 80% of carriers eventually get symptoms. On top of that, carriers have to make difficult decisions when it comes to having kids since there is a 50% chance we will pass the condition onto our offspring. We need to expand society’s understanding of what it means to be a carrier of a genetic disease. Healthcare providers can be good partners to carriers by making them feel seen and taking their symptoms seriously. We are not just vessels that carry a faulty gene. We are impacted by our carrier status in a myriad of ways.
M: What are some long-term goals for Remember the Girls? Where do you see the group in 5 years?
T: Two of Remember The Girls long-term goals are to:
- Fund research on X-inactivation and symptomatic carriers
- Help change insurance policies so more insurance companies cover family planning options.
In 5 years, I believe our group will have created many educational resources for our community and raised awareness of X-linked carriers’ difficulties among the medical community. I think our community will continue to grow and expand into more countries in the world, and hopefully have in-person carrier meetups and events!
About Remember The Girls
Being a carrier of an X-linked disorder can be frightening and lonely. Many carriers do not personally know any other carriers (except perhaps in their immediate family), so there may be difficulty in finding someone they can talk to who understands how they feel or what it means to be a carrier. In addition to suffering anxiety about possibly developing physical symptoms, female carriers may be devastated by the illness or death of a father, brother, or son from the disorder, or worried about their future reproductive options.
Remember The Girls’ mission is to raise awareness of the many issues facing female carriers of X-linked genetic disorders; to provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.
To learn more and get involved, visit: https://www.rememberthegirls.org
Interview conducted by Marie Discenza, MS, CGC
Marie is no longer a CooperSurgical employee, but has stayed on as a paid consultant (she is now in medical school!)
