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How has TS affected my life...
I had the opportunity to play Mickey and Minnie Mouse at Walt Disney World
when I was in college.
People think short is "cute" and "funny" so I rarely get very much respect. I am single... although I have dated all seven dwarfs.
I devote a great deal of time, effort and energy as chapter leader for the Turner's Syndrome Soceity of Philadelphia.
That must have been just what I needed, and I gradually recovered completely.
My Turner's was diagnosed by buccal smear at age 11 (in 1964), and there was not much information available then for my parents. My mom has since told me that she tried to find out more about Turner's at the time. There were medical texts indicating that people with Turner's were retarded. I did fine in school (academically) so she knew that wasn't the case... I'm sure my parents felt sad about the diagnosis, but didn't share that with me.
Other than telling me what the doctor had said (that what I had was called Turners Syndrome, that when I was older I would need to take hormone pills, and would not be able to have my own children), my family really didn't talk much about TS. That was probably because they were protecting me. I don't think I was overprotected though, and my parents did not treat me differently than my brother and sister. Years later (at age 27) I requested a karyotype, and found out that I have mosaic TS, with isochromosome. It was explained to me as follows: I have 3 different cell lines in my body, 45 XO, 46 X isoX, and a small portion of my cells (around 3%) are 47 X isoX isoX.
As a girl, I enjoyed skating, swimming, and horseback riding. I felt very "different" from the other girls, and Junior/ Senior high school gym showers were absolute torture! I did not date in high school. Having Turner's Syndrome can be an isolating experience if we do not have the opportunity to meet others (with TS) who understand, and share some of the same feelings and experiences.
I have had other health problems, including Crohns disease (inflammatory bowel disease), non insulin dependent diabetes, and ADD (Attention Deficit Disorder). My Crohns disease was diagnosed when I was 16. At 17, my gastroenterologist decided to take me off estrogen/progesterone hormone replacement to see if that would help the Crohns get better. I had not yet developed much after only a year and a half of hormone replacement, so I was upset about not being able to take estrogen/ progesterone. For some unknown reason, I experienced worsening of my Crohns symptoms when on hormone replacement. Therefore, I have had an "on again/ off again" experience with hormone replacement. Currently I use an Estraderm skin patch (estrogen) and oral medroxyprogesterone, and have tolerated this well for over three years. My diabetes and ADD were both diagnosed last year.
I have strong feelings about how the changes in health care in the US over recent years impact those of us with TS. It is clear to me that a "team" approach (including timely access to specialists when needed) provides the optimal care for Turner's Syndrome. I have found my own access to specialists restricted in recent years by my HMO.
I met my husband Larry in 1980, and we have been married for 6 years. We live south of Seattle, Wa. We're both natives of Seattle, and enjoy the outdoors (sailing and camping). We do not have children, but have a beloved (and spoiled...) 12 year old cat, who observes and supervises activities at our house.
The specialist who made the diagnosis did not offer much information or support about TS, apart from stating "you will not be able to have children". He also briefly mentioned hormone therapy, but considered it unnessary.
Thus I went on with my life, completing my training as a RN and then Midwife. Having the occasional, casual boyfriend but not really ollowing any serious relationship to develop.
I travelled extensively and regularly, also becoming heavily involved with my church youth group activities. (particularly Christian Youth Camps , often attending as a leader).
Even as a RN, I still had very limited knowledge of TS. (There are usually only small paragraphs in most nursing text books devoted to TS and they still tend to make statements like "all TS women/girls are retarded".
Eventually, I met and married Peter. We met through our local church, and Christian Youth Camp work. We married in 1989. The hardest part for me was explaining TS to him, when I realised our relationship was becoming serious. Even so, I knew in my heart he would be very understanding and accepting.
Five years ago a New Zealand TS woman came to Tasmania to do a PHd study on TS. She advertised in local newspapers and on local TV explaining she wished to contact other TS women/girls. She ended up being the first other TS women I had ever met! Through her efforts I eventually came in contact with the Australian TS Association, which is based in Sydney.
Generally, I feel that I have accepted my TS condition well and have not allowed it to stop me from achieving anything I have wanted to do. I think my personal faith has helped a lot in this. I do have osteoporosis but this has actually improved, much to my specialists surprise. (I have been on HRT for five years now) As well I have a chronic "glue ear" condition which has required several lots of grommetts. (ear tubes)
I am now 42 years of age. I am fortunate that I do not display any stigmata of TS, apart from being short. Others tell me that I also look younger than my years. (looking more like a 30 something women, which is rather flattering).
Peter and I enjoy a happy, quiet life with our spoilt male cat Patch. I enjoy reading,travelling, crafts,bushwalking (hiking) and attending our local church. (And of course a developing interest in computers).
I stand 4ft 8in. tall and I really didn't think much of not being tall because my Grandmother on my father's side was also 4ft 8. At first, the TS diagnosis scared me because I was so unfamiliar with what was going on with my body. I was told that I would never have my own children and that my secondary sexual characteristics would not fully develop. Now I am comfortable with myself, and absolutely love life!!!
In October, 1996, I married a wonderful man named Paul who has been so supportive and understanding about TS. We are going to attempt the donor egg program in the next year or so. Wish me luck! Most importantly, stay well and happy.
Turners has not been a major issue in my life apart from the fact that I am only 4' 10". Unfortunately I was put on a too high dose of hormone replacement at 14 (adult dose) which meant that my bones fused over early and once I found out about Growth Hormone it was too late(16).
My mother told me right from the beginning that some people couldn't have children etc so that I would be prepared for the issue of children which has been a very big one for me as I love children. I had an average amount of teenage boyfriends and 4 years ago met my fiancee Mel who I am marrying in September this year after a long 3 and a half year engagement. Mel has known about T.S. from very early on in the relationship and has continued to be supportive. As I said before, the only symtoms I have really got of T.S. is the short stature and not being able to have children.
I consider myself lucky to be healthy and to be able to enjoy life as much as I do. If nyone would like to contact me I can be contacted at vk6tva@omen.net.au Love to All, Maria
I wasn't diagnosed as having TS until I was 18 years old, and even then I wasn't told anything about the additional problems TS women and girls may have - I had to research that part out myself, and luckily, I was spared the majority of the more severe kidney and heart problems.
The biggest childhood problems that I had from TS were the lack of growth after 12 years old (I actually reached 5 ft.), the tendency to being overweight, and visual/ spacial perceptual difficulties causing me to be awkward and clumsy in movement. The teasing that one gets when one is overweight and clumsy is very painful, and not knowing why really gave my ego a blow.
Of course, when I became a teenager and didn't start to develop like the other girls, that just set me farther apart. I was tested at 15 for TS by bucal smear, and the results were not conclusive, so the doctors didn't say anything, but said that if I hadn't started developing by 18, they'd do further testing.
Well, I didn't, so a gene kryotype was done, showing that I was TS... It really came as a shock that I wasn't going to be able to have children, and for quite a while I was just numb. Then, I came to the realization that I could, if I wanted, adopt children, and give really deserving children a home.
I then had to come to grips with learning WHAT TS really is, and how it affected me, other than the odvious. That's when I learned that I had visual/ spatial perceptual problems (there had been no LD testing) that I had somehow overcome (or learned to compensate for) and that, luckily, I had been spared the worst of the heart and kidney problems that TS girls may have.
I did have to, and still do, work on my self image and my self esteem. I finally, at the age of 40, found the man who is now my husband, who is still, as I am, in the stage of continuing to learn how TS has affected me and being patient and understanding. I am now just finding out how TS affects us as we get older, with tendencies to diabetes, high blood pressure and autoimmune disorders. I am affected to an extent by all three, and have to actively control them with medication. Here again, if the information had been available 20 or so years ago, I could have been more vigilant as to the onset of these, and been actively working to forstall their appearance.
I have some TS stigmata. I'm only 4' 7", overweight for my height, have an abnormal bone structure including a "caved-in" chest, a kidney malformation and frequent infections, hearing loss, high blood pressure, etc.. I have found that even now most health care professionals are not very knowledgeable about TS, do not care to discuss the condition, and they do not follow the recommended care guidelines for those of us with TS. I also have difficulty with spatial relationships and math, which made school difficult since my teachers and parents had no concept of learning disability.
I also experienced the isolation that seems common to TS individuals. Making and maintaining friendships has always been difficult for me. I experienced rejection by other children from the time I started school because I was small and clumsy. During adolesence dates were non-existent. Even my own family is not especially accepting of me since they are somewhat embarrased by my appearance and don't have a good understanding of the physical and mental effects of TS.
Despite the challenges presented by having TS I have managed to preserve. I have been self-supporting since the age of eighteen. I worked my way through college and law school. I practiced law for awhile but stopped when I realized that I was not being taken as seriously as other lawyers due to my height and appearance. I have been employed for ten years as a law librarian in a large branch office of an international law firm, and have many additional years of library experience.
While the fact that I have TS has been a major factor in my life try to treat myself as normally as possible, and to keep in mind that there are others with other types of medical conditions which affect their lives also.
For the most part I've done very well. I did well in school, although because I was "different" I didn't have many friends in school. I am a musician (I play the oboe), and have played since Junior High School so I did a lot of performing and developed some close friendships with other people (my age and older) who were musicians, many of whom have stayed my friends over the years. I've mostly been more comfortable around older people (and younger people) than around people my own age, and that's OK. I some very close friends now, and where friends are concerned I've always felt that "quality" was more important than "quantity". I also am very close to my family, and consider them the most important people in my life! I especially treasure my relationship with my parents!
As far as my health, well, I've had my challenges, but for the most part I've been pretty lucky. I don't have any of the major heart, kidney, and ear problems associated with Turner Syndrome, but I do have quite a few orthopedic problems, some of which may be associated with TS. I'm 4'7" tall, and have autoimmune thyroid disease as well as non insulin dependent diabetese, which is very common for TS women. The biggest challenge for me has been severe arthritis associated with the skin disease Psoriasis, which I've had since the age of 14. Because of the severe, destructive nature of this disease, I have had many surgeries on my knees, including bilateral Total Knee Replacement. In all I would say that my joint disease has been much more of a challenge for me than the Turners Syndrome has, and more profoundly affects my life.
Of course I love children and would love to bear a child of my own. I think that the most important part of being a mother is raising the child and there are so many children that need good parents that don't have them that I don't feel bad about the prospect of being a mother to one of them. As yet I'm unmarried so that issue isn't so pressing right now. In the meantime, I can dote on my two gorgeous, sweet nephews which is after all an "aunties privledge"! As far as height goes, It was much more imprortant to me to be taller when I was younger, and seems to have become less important to me as I've "grown up".
I have enjoyed the chance to share with others their experiences in learning to cope with this challenge. Thanks Karen for creating this page!
When I was 22, I met Ian and we married two years later. We knew then that we might not be able to have children, but that did not bother Ian one bit. After undergoing 4 years of infertility treatment in a London teaching hospital and undergoing test after test after test, I was diagnosed. I was given very little information, the doctor actually said he had only seen Turners in a textbook and had never come across a case before. I was horrified. I though I was the only one in the world with this condition.
In 1992, Ian & I immigrated to Alberta, Canada. One day I was reading our local newspaper when I saw an article about Turners Syndrome. I grabbed the telephone and called the number given in that article. I spoke to a lady named Christine who also had Turners and we spoke forever. It was great! I went along to the Support Group later that month and met 14 others with Turners. One thing bothered me though, I did not show the same signs of Turners as they did. I went to see my gynecologist and asked him to recheck the diagnosis. I was then sent to see a geneticist at the University of Alberta Hospital. Ian and I spent over an hour with this doctor. She told me so much that I did not know. I also found out that I had damage to my 13th chromosome. It was explained that part of my X chromosome and part of my 13th had broken away and transposed. I show little signs of Turners: I am tall at 5 ft. 2 ins., my arms are slightly bent, I have a slightly high roof of my mouth, but I do have the Turners problem of excess weight! My main problem at the moment is finding a job. I have been unemployed for over a year since being laid off from my job as a secretary. I will keep trying and hope I will be successful.
I was so pleased to find Karen on the Internet, it is comforting to talk to others with the same problem. I no longer feel alone.
Growing up for me was very hard, because like many TS girls, I was very short. The teasing wasn't too bad, but I always found it hard to realte to others my age, and that was especially hard in Jr. High, when the thing to be is like everyone else. Most of my family is short, too. That's probably why I was almost 17 when I found out I have TS. When diagnosed, I wasn't quite 4'4". Over the last coupleof years prior to that time, my growth had slowed down quite a bit.
In 1986 they just started to experiment with Growth Hormone on TS girls, so right away they took a bone age. They determined that my bone age was young enough to do shots. So, instead of estrogens, I began GH shots, and continued them for over 4 years. I am happy to say that I am now 4'11 1/4! This was especially amazing in light of my age at the time. I finally began estrogen therapy and now have the privelege of experiencing a monthly cycle (please note sarcasm here). Honestly, the hormones treat me well, I don't have any side effects, and it does make me feel more "normal". This is the only real characteristic I have of TS,although my arms do bend out quite a bit, both my finger and toenails curl up, and I have a low hairline, but I have never had any heart, bladder or ear problems, and I do not have any skeletal deformations.
I have had some contact with other women with TS, and I have discovered that although the medical fieldhas made strides in their knowledge of TS, there is still a long way to go. Like many, I am stuck in the bureaucratic red-tape of HMO's and finding a doctor who knows enough about TS to adequately treat me is very difficult.
While growing up, I used to joke with my female friends about how I was going to join a convent after high school, since no man seemed to find me attractive. It was frustrating, because I really felt unattractive, and I never had any dates, at least not until I went away to college. This is where I met my husband Todd. The infertility issue really wasn't a problem. I was honest with him from the start, and he didn't blink an eye. We're still wishy-washy about the idea of actually having kids, since we are both inherently selfish and enjoy each other so much. We almost prefer the idea of being the favorite aunt and uncle.
Today I work as a loan officer for an organization that lends to churches, and I am working on my thesis for my Master's degree in Spanish at Portland State University. I too hated math in school, and I have spatial and coordination problems, which inhibits my driving, although I was a cheerleader in high school. Like many others who responded to this site, I find that I have to work extra hard to succeed. For me self-esteem and confidence do not come easily, and I still haven't decided whether it was my upbringing, TS, or recent events in my life that have really damaged me emotionally. Maybe it's a little of each. Nevertheless, I do the best I can with what I've got, and I always remember to count my blessings.
Thank you, Karen for such a wonderful web site, and thanks to all who were selfless enough to share their stories. It is heartening to know that I am not alone! I can be reached by email if anyonewould like to share your story or new information about TS.
Hi to Karen and all at her website, which I indeed will check out. So far,
TS-US, where Karen saw my name, has provided me with more info about
Turner's then I ever knew. The best part is getting to meet local people
on-line, so thanks to Karen for her website.
Well, I'm 4'8" and 40, fortunately in excellent health, although small
things like sinuses and myopia fit the Turner's profile.
I've been married 2 years and starting the process of adopting children.
I'm a special education teacher, currently pre-school autism. Other
interests are choral music and dressage horseback riding. I am a Christian
and am active in a traditional Anglican church.
Best wishes to all as you pursue your goals. For what it's worth to younger
TS women, I don't feel that TS has impacted my adult life, once the hurdle
of adolescence was overcome. Thanks to all for sharing their experiences
and proving that our most important characteristics are not physical, but
our souls and personalities.