True Story: I Have Turner Syndrome -
Dating is like an interview for marriage - you have to be where you need to be . Merry, it's a super awkward stage for all girls, Turner Syndrome or no Turner. Beit-Aharon has Turner syndrome, a disorder that stunts sexual stories by women, including her daughter, who have the syndrome, titled. At 28, Turner Syndrome continues to dominate my life and now the time If a TS girl is fortunate enough to receive an early diagnosis, like me.
Talking about Turner, Beit-Aharon says, means talking frankly about womanhood, sex, relationships, and raising kids — topics not all doctors discuss enough. Get The Weekender in your inbox: The Globe's top picks for what to see and do each weekend, in Boston and beyond. Sign Up Thank you for signing up!
Sign up for more newsletters here Our biological sex is determined by a pair of chromosomes — gene-carrying bundles — inherited from our parents at the moment of conception. Boys get an X chromosome from mom and a Y chromosome from dad, while girls get an X from both. Those with Turner only have one functioning X chromosome. The second X chromosome is either abnormal or completely missing. More than 90 percent of women with Turner, which affects 70, in the US, lack normal ovarian function and have reduced fertility.
At age 9 she was 3 feet 8 inches tall, the size of a 4-year-old. There, her chromosomes were mapped and it was discovered that she had a missing X chromosome. Advertisement Miriam Beit-Aharon now has no obvious outward signs of having Turner, except perhaps for her trademark short stature — she is now 5 feet tall.
But a closer look reveals low-set ears, which give her recurring ear infections, a double row of eyelashes, and slightly crooked elbow joints.
A Personal Story: My life with Turner Syndrome · thebluetones.info
The majority of women with Turner have typical intelligence, though up to 5 percent suffer from severe learning disabilities. Some may have trouble with tasks that require spatial awareness. Some may also have trouble with math and understanding nonverbal cues.
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Luckily, most symptoms associated with Turner can be remedied. Less easily fixed are the social complications, said Marsha Davenport, a pediatric endocrinologist at the University of North Carolina. Eighteen women, age 22 to 58, answered the call. One talked frankly about her first time having sex and the path toward satisfying intimacy. Some wrote about the jealousy of not being able to conceive children, others about the joys of marriage and adoption. My life with Turner Syndrome At 28, Turner Syndrome continues to dominate my life and now the time is right to step out from the invisible wall I seem to have built around myself.
Women with Turner Syndrome tell their stories
By Triona Keane Monday 29 Sep7: But enough is enough. At 28, Turner Syndrome continues to dominate my life and now the time is right to step out from the invisible wall I seem to have built around myself and reveal my true identity. In the past number of years I have become increasingly frustrated by the lack of knowledge and awareness surrounding Turner Syndrome TS both in the public domain and, in some respects, the health domain as well.
Thus, this article is borne out of a need to educate the public and raise awareness of the everyday intricacies of living with TS. The following article charts not only my personal medical complications but also the psychosocial difficulties experienced as an adult living with TS. In short, the kind of story that would have benefited me enormously when I stood on the brink of adulthood, completely unaware of the challenges that I would face and was totally unprepared for when the onslaught came.
And so, it is with this in mind that I decided to forfeit my anonymity and go public with my story. My story At four months old, I was diagnosed with a condition called Turner Syndrome.
TS is a chromosomal abnormality occurring in approximately one in every 2, live female births. Not common enough to front lots of research campaigns but not rare enough to bring about some nosy inquisition, it is a little known condition.
Most TS sufferers also develop an underactive thyroid gland, a heart murmur and recurrent ear infections. At the time of my diagnosis ininformation was sparse. It was a bleak time for my parents who were presented with this little known condition with an uncertain prognosis. I spent much of my first year teetering on the precipice between life and death.Women and Girls with Turner Syndrome
Born a tiny 5lbs 2oz, I failed to thrive. Spending three months in Crumlin hospital as a fragile baby, doctors and nurses fought to build me into a healthy blossoming baby. I was so weak and fragile, just a hospital cold would have had devastating repercussions.
It took me a solid 12 months to make a complete recovery. Over the next two years, life reverted to normal with the exception of some developmental delays such as speech and taking my first steps. At two-and-a-half, I underwent open heart surgery to broaden the aorta, the main artery through which blood leaves the heart. At five years old, I commenced daily growth hormone injections in an effort to boost my eventual adult height.
Around this time, I was also referred to an Ear, Nose and Throat specialist for treatment.
A Personal Story: My life with Turner Syndrome
Turner girls are often born with waxy ears making them highly susceptible to recurrent ear infections and I was no exception.
Countless grommet insertions followed on a yearly basis. Constant hospital appointments gave me regular happy days away from school and usually a lollipop followed a visit to the doctor which always went down a treat now I know where I developed my sweet tooth.
Blurred vision and headaches I continued with my growth hormone injections until I was about ten, when another medical problem arose.
I began to experience frequent headaches and occasional blurred vision. At a routine eye appointment, doctors became concerned about cerebro-spinal fluid pressing on my optic nerve and I was admitted as a matter of urgency for CT scans, visual fields tests, photos of the back of my eyes and a dye test.
I was ordered to cease all growth hormone injections immediately as doctors believed a link existed between the two. This was a devastating blow. If a TS girl is fortunate enough to receive an early diagnosis, like me, growth hormone injections would ordinarily be continued until twelve or 13 years of age.
By ceasing all treatment at just ten, I was missing out on a valuable three years of injections which would have serious implications for my final adult height. Some months later I was admitted to hospital for surgery that promised to relieve the swelling pressing on my optic nerve. The operation was a success and my growth hormone injections were now a distant memory. At 13, I commenced my first dose of medication that would promise the induction of puberty; finally I could begin the process of feeling like a normal teenager.
It was around this time that I was diagnosed with an underactive thyroid gland and so I cast Eltroxin tablets into the mix as well. The next few years were spent juggling a concoction of different medications and different doses before arriving at a happy compilation. After a few years of inducing oestrogen and progesterone to bring about puberty, I eventually progressed to the pill for hormone replacement. The news was bleak Meanwhile, my ears were growing increasingly aggravated and after suffering a perforation in each eardrum, my hearing loss had become quite profound in places.
At 17 I was given a new lease of life with my first set of hearing aids and I was over the moon! All of a sudden a whole new world opened up to me affording me a better quality of life. But I continued to suffer from recurrent ear infections and my ENT specialist eventually decided to repair the right eardrum. Straight after my Leaving Cert, I was admitted to hospital for the op.
I spent six hours in surgery and the news was bleak.
They had found that one of the crucial bones in the middle ear, the hammer, had rotted away and made its way into the inner ear. If it had been left there, it could eventually have travelled as far as the brain, infecting the membranes. As impossible as it may have seemed, my ears were in an even worse state than initially predicted. That summer was spent travelling between home and outpatients for dressing changes to the operated ear which were frequent and uncomfortable.
To add fuel to the fire, I had to rely on just the one hearing aid while my right ear healed when, really, I needed the two. How do I explain the effect on my life? One evening, over drinks in a local pub, a close friend asked me how TS affects me and to my astonishment, I found it difficult to give a clear and concise response. First, there is the fact that I look about half my age, stemming from a combination of both my short stature and, I hope, good genetics.
This has enormous social implications. To this day, I still get mistaken for someone who is under Only two years ago, I was at a Turner Syndrome conference in a Manchester hotel. Needless to say, bar staff and management received a serious education on Turners Syndrome that night. Over the years, people have treated me differently as well because they believed I was much younger than my years. Fertility Second on the list of concerns is the matter of infertility.
In TS women, the ovaries do not develop, meaning absolute certain infertility.