Beth's Home Page /Growing Up with Turners
I was born in the mid 1950's and raised in a small town in Indiana. My father was a doctor, a general practitioner, and I had two older siblings. As far as anyone could tell, I was a healthy, happy, normal little girl. If only they had known! Either before or sometime after I was conceived, one of my two X chromosomes failed to divide properly. The result was something called Turners Syndrome. In 60 % of the cells in my body, there is a normal X chromosome, plus a second one that is abnormal. In the rest of my body, there is only a single X chromosome. This is a mosaic form of Turners Syndrome. Others with Turners have a complete absence of the second X chromosome.
Me at nine months and six years of age.
My early childhood was what you would expect for a normal little girl. The pictures above are very typical. My early pictures show a cute little thing with a mischievous smile. There was only one warning of trouble. I was prone to get ear infections. I have since learned that many girls with Turners often have this problem. It results because the Eustachian tube from the back of the throat to the inner ear does not have enough slope to properly drain fluid. In my case, I eventually outgrew this problem.
Unfortunately, I went through my childhood and early adolescence before my condition was diagnosed. I remember having a lot of earaches, but this did not cause my doctor to make any attempt to find out why. My adenoids were enlarged, and they were removed when I was five years old. About the only thing I remember about that was that I drove the nurses nuts by "accidentally" dropping my toys on the floor over and over again.
So I grew up as a typical little girl. I had a fair number of friends, and we had fun doing things little girls do. I was a well-behaved student, with above average grades. I was always small for my age. I was pretty good at individual sports, such as skating or swimming. But, by the time I reached the fifth grade, some of the problems associated with my condition began to manifest themselves. I was growing unusually slowly, falling even farther behind other girls my age. And I looked a lot younger than I was. When I reached high school, I was not only tiny: I was not showing any sexual development. My parents would dismiss this by saying I was just a "late bloomer," but that was of small comfort to me. The pictures below show my situation quite clearly.
Me at ages of eleven, thirteen (standing between my mom and sister) and fifteen years.
How can I describe my childhood with Turners Syndrome? It is frustrating, knowing you are short and small for your age, but not knowing why. It was a big pain to have to constantly explain to people that I was considerably older than I looked. My family treated me in a manner appropriate for my age, but a lot other people in my daily experiences often did not. Myself, I felt I was perfectly normal except for my small stature. I do remember being teased a lot in school. I believe that this had a lot to do with the low self-esteem I had through most of my junior high and high school years.
Finally, when I was sixteen, and had not yet had my first period, my parents came to the conclusion that there really must be something wrong with me. I went to the University of Colorado Medical Center in Denver, where I got a very thorough workup. It was there that I was diagnosed with Turners Syndrome. Actually, they told me it was "Modified Turners." They did not bother to tell us that for all practical purposes, what I had was the same as Turners. I think they thought I would feel less stigmatized if they just called it modified Turners or Turners-like. They also gave me the bad news that it was highly unlikely that I would ever be able to have children.
Because of my youth, possibly the inability of my parents and myself to face my situation, we dealt with my condition without really dealing with it. Though I willingly took the prescribed treatment for my condition, I never really thought of myself as a person with Turners Syndrome. The treatment was initially a regimen of hormones to promote my growth, followed after a couple of years by female hormones for my sexual development. The former gave me some limited success; it caused me to grow two more inches to give me a height of 4 feet 10 1/2 inches. The latter treatment came too late for any improvement in my social status in high school. And it was eventually, in my opinion, a little too successful. A negative side effect was unwanted weight gain, which I have been fighting ever since. The picture below demonstrates how my size and appearance were transformed in those few years.
Me at age eighteen.
I did not have the counseling and guidance that I now realize I needed, even after my condition was diagnosed. Of course, they did not know as much then as they do now. I did not feel that I needed counseling, so therefore never requested it. Does a person in her teens or early twenties know what she needs? I believe that with proper counseling, I would have been more able to cope with my situation and build a better life for myself.
After graduating from high school and a couple of years of college, I set my goals toward a nursing career. Unfortunately, that did not work out. So, I went back to school and got a bachelor's degree in biology. I found a man who could love me just as I am, and we married in 1983. We adopted a son in 1986. I currently work in a medical research laboratory, and hope to continue to do so for the forseeable future.
Me at age thirty-one with my husband and son.
Only after reaching my forties, did I begin to actively search for information about Turners syndrome, mostly on the Internet. I also spent a lot of time reading all of the available documents relating to my condition. I got in touch with a geneticist, who with more modern techniques was able to provide me with a more accurate picture of my genetic makeup (genotype). I became aware of the Turners Syndrome Society of the United States (TSSUS) through the Internet, and joined a local chapter of the organization. I learned a lot more details about the condition, more about the health risks, and how they should be treated. I learned how methods of treatment have improved since I was young. I attended a lecture at a meeting of our chapter about nonverbal learning disabilities that often come with it. We were told that it is important to have counseling available to help Turners children to accept and make the best of their situation. It is also important to have it for those who are having difficulty relating to others.
What I found out from all of this research was not only surprising, but it has also gave me a challenge in life, if I am able to meet it. It is the challenge of being able to make myself available to help others with this condition. That is the principal reason I have created this web site. It is also one reason that I participated in a Turners syndrom study at the National Institute of Health. I feel that what I did could provide valuable information for their research, and ultimately help others with this condition. Times have changed and much more can be done for girls with Turners Syndrome than when I was young. A lot more has been learned, and now it's time to come out from behind the veil and say, "We are here," "We have a voice," We are human beings with feelings," and, "We will not be ignored."
It would have been much better for me if my condition had been discovered when I was young. If my hormone therapy had been begun at an earlier age it would probably have been much more successful. That and some counseling would also have helped my social development during my adolescent years. This is why I believe it is very important to identify Turners Syndrome as early as possible.
Our Family Now (2008)
There are numerous clues to indicate a child has Turners Syndrome. The surest way is a genetics test during pregnancy, or after a child's birth. One of the more obvious physical characteristics shown by many Turners babies is a webbed neck. Many children with Turners (including me), however, do not show any trace of this characteristic. Another is the tendency toward ear infections. Unusual swelling of a baby's hands or feet and widely spaced nipples are other clues. One case of Turners was discovered after a doctor noticed that the baby had a hammertoe.
But what if the genetics test indicates an unborn baby has Turners? One parent of a child with Turners told me that a doctor had recommended that she should have an abortion, because the child would be mentally retarded. This false impression became established early because Turners was first identified in institutions for the mentally retarded. How fortunate that she insisted on a second opinion! She is now the proud parent of a beautiful child with normal intelligence. I have found a number of highly respected medical texts that still contain this fallacy, at least in part. I do not think I am retarded, considering I earned a bachelor's degree, and I was on the Dean's list for my last two semesters in college.
So where am I headed from here? Right now, I am busy writing romance novels, with the hope that I may be able to publish my first book soon. One step at a time, and one day at a time will be enough for now. I may be fifty-three years old, but in a lot of ways I am still "growing up." I have found that to be typical of just about everyone. We are all still in some way "growing up". I truly believe in cradle to grave education. It is my belief that we are all still "under construction." I like the saying, "Be patient, God isn't through with me yet!" As long as I have any breath left in me, I will continue to study and learn; especially if it is of any benefit to the girls and women with Turners Sydrome.
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