A woman has told how she made the difficult decision to have her ovaries removed aged 19 to stop her developing cancer.
Emily Balck, 24, was diagnosed with Turner syndrome when she was in the womb.
The condition makes her five times more likely to develop skin cancer and 30% more likely to develop ovarian cancer had her ovaries removed aged just 19.
In addition to having her ovaries removed as a teen, she also had skin cancer on her neck aged 22.
Emily from Salem, Oregon, said: “It can be pretty lonely to have the condition and it’s pretty shocking to get cancer at such a young age but I’m not letting it get in the way of living my life to the fullest.”
The condition affects 1 in 2,000 women and is caused by one of the X chromosomes (sex chromosomes) being missing.
It can cause a variety of medical and developmental problems, including short height, failure of the ovaries to develop, heart defects, and increased likelihood of certain forms of cancer.
Her parents knew about her diagnosis before she was born – a rarity given that most people are not aware they have it until they reach adolescence.
Emily said: "I was very fortunate where my parents were able to find specialists."
For 13 years Emily participated in research studies where specialists ran various tests on her, checking hormone levels and cognitive development.
In her journey, she found an endocrinologist who specialises in Turner syndrome and has been instrumental in her care.
Emily said: "He has been super helpful.
“When you’re little, the main concerns are growth issues and cognitive development issues.
“The older you get, there’s a lot more that comes into play."
Emily was monitored to ensure she went through puberty and continues to be monitored for increased cancer risks.
In early college, at just 19, she faced a significant decision due to ovarian failure - which is common among people with Turner's syndrome - and opted for surgery to remove her ovaries to mitigate cancer risks.
Emily said: "Making that decision was really difficult, but I felt at peace about it as the best health decision for myself."
Her health journey took another turn when she was diagnosed with melanoma on her neck aged just 21.
"It was pretty shocking, it’s such a young age to get skin cancer at 22."
A major surgery on her neck followed, but early detection prevented the cancer from spreading.
Emily said: "Having to go through all of the cancer screenings was pretty intense when you’re in college you just want to be having fun and not thinking about your health."
Turner syndrome's impact varies greatly from person to person - most people with the condition lead full and healthy lives, though there is a slight decrease in life expectancy, according to the NHS.
"Right now, it’s more just being vigilant,” Emily said.
“I'm on a series of medications to take every day, and that’s really the only thing I need to think about at the moment."
Emily Balck, 24, was diagnosed with Turner syndrome when she was in the womb.
The condition makes her five times more likely to develop skin cancer and 30% more likely to develop ovarian cancer had her ovaries removed aged just 19.
In addition to having her ovaries removed as a teen, she also had skin cancer on her neck aged 22.
Emily from Salem, Oregon, said: “It can be pretty lonely to have the condition and it’s pretty shocking to get cancer at such a young age but I’m not letting it get in the way of living my life to the fullest.”
The condition affects 1 in 2,000 women and is caused by one of the X chromosomes (sex chromosomes) being missing.
It can cause a variety of medical and developmental problems, including short height, failure of the ovaries to develop, heart defects, and increased likelihood of certain forms of cancer.
Her parents knew about her diagnosis before she was born – a rarity given that most people are not aware they have it until they reach adolescence.
Emily said: "I was very fortunate where my parents were able to find specialists."
For 13 years Emily participated in research studies where specialists ran various tests on her, checking hormone levels and cognitive development.
In her journey, she found an endocrinologist who specialises in Turner syndrome and has been instrumental in her care.
Emily said: "He has been super helpful.
“When you’re little, the main concerns are growth issues and cognitive development issues.
“The older you get, there’s a lot more that comes into play."
Emily was monitored to ensure she went through puberty and continues to be monitored for increased cancer risks.
In early college, at just 19, she faced a significant decision due to ovarian failure - which is common among people with Turner's syndrome - and opted for surgery to remove her ovaries to mitigate cancer risks.
Emily said: "Making that decision was really difficult, but I felt at peace about it as the best health decision for myself."
Her health journey took another turn when she was diagnosed with melanoma on her neck aged just 21.
"It was pretty shocking, it’s such a young age to get skin cancer at 22."
A major surgery on her neck followed, but early detection prevented the cancer from spreading.
Emily said: "Having to go through all of the cancer screenings was pretty intense when you’re in college you just want to be having fun and not thinking about your health."
Turner syndrome's impact varies greatly from person to person - most people with the condition lead full and healthy lives, though there is a slight decrease in life expectancy, according to the NHS.
"Right now, it’s more just being vigilant,” Emily said.
“I'm on a series of medications to take every day, and that’s really the only thing I need to think about at the moment."
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FunTranscript
00:00Fantastic question, let's talk about it. It's rare, but it has happened, it could
00:06happen. It's rare because one of the biggest associated conditions with
00:12turners is infertility because of ovarian failure, so basically when we're
00:17born our ovaries fail, so we would not be able to ovulate and make eggs to be able
00:24to produce an embryo. I am personally a part of that gang. I would never be able
00:31to biologically create my own child. I actually had my ovaries and my tubes
00:37removed when I was 19 because of my increased risk for ovarian cancer, so I
00:42could never create a biological child, but I still have my uterus so I could
00:48carry the child. I would just have to get an egg donor to create the baby. This
00:55is an amazing question, kind of a tricky answer because Turner syndrome itself is
01:00considered this condition because you're not textbook female. You either are
01:07missing the second X chromosome entirely or just a piece of it, but you're also
01:11not textbook male because you don't have white chromosomes, so they just kind of
01:16consider it this and it's kind of under that category. I just want to be clear,
01:21physically we are women, if you catch my drift, like those are the bits that we
01:25have, but like internally, hormonally, all of that is very off-kilter, off-balance,
01:32which is part of the reason that our features tend to come across a little
01:36more masculinely. Amazing question, let's talk about it. It absolutely impacts
01:42physical milestones and development and also cognitive development, you're very
01:46correct. My parents were told when I was pretty little that I'd probably struggle
01:51pretty heavily with math and science and I think English as well because of the
01:58Turners, and so I was actually on an IEP plan for a while as like a just-in-case
02:03measure, and it was helpful at some points, but the older I got, the less I
02:08really needed it, the more I kind of understood myself and could kind of
02:11advocate for the help that I needed to get where I needed to be. So I don't
02:17really feel like it held me back per se, like once I reached like middle school,
02:23high school, I was usually a year ahead in math, and I'm currently in an MA
02:27program, so I couldn't have been too bad at science, and driving it took me
02:32probably a little bit longer than most. I really had to get comfortable with kind
02:37of spatial awareness, but the longer I've been driving, the easier that has
02:42become, and it's not really a struggle anymore for me. Like most conditions,
02:45there's definitely a spectrum. There are some very low-functioning Turners girls
02:51that need a lot of extra love and care and attention, and there's also girls on
02:56the opposite side, which is like kind of where more I'm considered, that are
03:00pretty high-functioning and can live completely normal lives. I'm very
03:04fortunate to be on that side. I know it's definitely not the case for everyone, and
03:08I just want to encourage all the Turner's girls watching this, don't let
03:12them put you in a box. Just because something is usually true does not mean
03:17that's the way it has to be for you. That's one of the reasons I worked as
03:20hard as I did. I did not want to be put in the box, and I did not want to just
03:23like accept what was supposed to happen to me, or how it was supposed to be. So I
03:28learned how to work with myself to get where I am now, and you absolutely can
03:34too. Is it hard? Yes, but you absolutely can do it. So I just want to encourage you,
03:38don't let them hold you back.