Deciding to put pen to paper and provide an honest and frank account of my personal story was no easy task. Some of the revelations I will divulge over the coming pages I haven’t even confided in my closest friends – 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.
Let’s not forget, however, that the purpose of this article is twofold. 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 account charts not only my personal medical complications but also the psychosocial difficulties experienced as an adult living with TS. In short, this is 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 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.
At four months old, I was diagnosed with a condition called Turner Syndrome. TS is a chromosomal abnormality occurring in approximately one in every two and a half thousand live female births. It is a little known condition – not common enough to front lots of research campaigns but not rare enough to bring about some nosy inquisition. While short stature and infertility are the most prominent features, several other health and psychosocial implications interact to affect the sufferers’ quality of life. Most TS sufferers also develop an underactive thyroid gland, a heart murmur and recurrent ear infections. At the time of my diagnosis in 1986, information was sparse. It was a bleak time for my parents who were presented with this little known condition and an uncertain prognosis.
I spent much of my first year teetering on the precipice between life and death. Born a tiny 5lbs 2oz, I failed to thrive. Spending three months in Crumlin hospital as a fragile infant, doctors and nurses fought to build me into a healthy blossoming baby. I was so weak and fragile that a mere hospital cold would have had devastating repercussions. It took me a solid twelve 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. Turners’ girls are often born with waxy ears which make 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 got my sweet tooth from!
Triona’s story continues on Page 2: