If you would prefer to see this site in frames with its full index, please click here.
The two problems that dogged me pretty much through my childhood were ear problems (a congenital hearing loss as well as frequent ear infections) and my height. A memory I have is starting fourth grade at a new school, getting into line for my new class the first day of school and having my classmates point me towards the kindergarten.
I had a fairly normal childhood, and kept busy in most of the normal things - I was a flutist and oboist in 2 bands, was involved in Model United Nations and many other things. It seemed to me that once people got to know me they accepted my differences.
I had what I consider an appropriate number and level of teenage boyfriends, and married my college sweetheart. Gary is a wonderful man and accepted my TS without question. We have been married since 1989.
As an adult I have to say that employment has been my biggest problem. Perhaps this is due to my own mistakes, but it could also have to do with a "heightist" society where taller people are considered more competent and more intelligent. I currently work in the Internet world in a production capacity [more about my job in my office.]
Psychologically, I think the greatest hurdle for me has been self esteem. I have always seen myself as abnormal, despite the fact that I've done pretty well for myself. I'm working on that, however, with the help of my husband and friends.
I am 4' 10", the absolute average for Turner women of my generation. I have some of the Turner stigmata, and went very, very grey very, very early, but my health has been excellent, and I am enjoying life to the full.
I have been to two National Turner conferences in Australia, and really enjoy meeting the young ones, and seeing how different things are for their generation. Until I was about 45, I had not met another Turner individual, and when I did, it was the little sister of my daughter's then boyfriend. My daughter met this boy, who lived in a town some distance away from where we lived, through the Scouts. One day, his family came to our town, and my husband met them in the city centre. The girl was introduced to him, and, later, Gordon commented quietly to her mother about her size. Mother started explaining to him about Turner Syndrome! A very strange experience!
Until about ten years ago, there was little information and support for Turner people and their families. I tried researching in the local library, but this was out in the country, and the information was TERRIBLE!!!!! And my medical specialist, while excellent in his treatment of me, wouldn't give me any contacts, or much in the way of information. Fortunately, by that time, I had it all pretty well sorted out in my own mind, and I had the understanding and support of my husband and family, so it didn't bother me, but it was annoying.
Back when I was diagnosed at 12 years of age, there was, of course, no Growth Hormone. They tried to assist my growth as much as possible by delaying my puberty, with the understanding that as soon as I started on sex hormone therapy I would stop growing. Without sex hormone treatment, Turner girls will continue to grow very, very slowly but steadily until well into their 20's, but the psychological cost is very high. By the time I was 16 or 17, I was getting distressed about being a child among my classmates who were by then young men and women, so I was started on estrogen / progesterone, and I have thrived since that time.
I met the man that I ended up marrying when I was in my early 20's. When our courtship started getting serious, I had to be honest with him about being TS, because we were both thinking in terms of raising a family. He went away and thought about it, and came back next time with a newspaper clipping about all those beautiful babies just begging for loving adoptive families. Things were very different in 1969!
I don't think you could call what we had in the beginning 'love at first sight', but we were friends from the first time we met, totally comfortable with each other. We have had the ups and downs that all married couples have, but we have always had each other. And now, in our middle years, our relationship is so strong, physically and emotionally, that it frightens me sometimes. I think our grown adopted children sometimes consider it a little improper, but they do depend a lot on the stability of our relationship, at a time when they are still working out their own adult relationships.
Gordon has been my fellow-traveller on my journey of discovery in regards to Turner Syndrome. He is delighted that, at last, decent information and contacts are becoming available. He is a very keen supporter of the TS group, would like to see more partners involved. We are going to the International Conference in England in July 1997, and he is looking forward to it as much as I am.
What's it like growing up with TS? I never really understood "what was wrong with me" until it was time to go on the hormones (age twelve) and the doctor explained it all. Till then, I just knew that I was shorter than the kids in my class and sometimes got teased a lot. Surprisingly, my visual difficulties did not affect my performance in gymnastics and I took lessons for quite awhile and competed for one year. That's when the "Fear factor" and poor depth perception came into play and I became too scared to do all the next more difficult moves!! But I still love to dance, and sing too, as well as play the piano (reading music is hard but I can do it) and have been in the chorus of a couple of community theatre shows. Learning to drive was a real bear and took a lot of courage on my part AND my dad's but I succeeded at that too.
I am lucky enough to be blessed with a good mind and I succeeded in getting my bachelors degree in Occupational Therapy. That field didn't really work out for me but I made a career change to librarianship--which, with my congenital love for books, I should have done in the first place!!!! It is a perfect place for me to be.
Relationships with kids at school were always difficult and my self esteem sometimes took a real beating. But I surrounded myself with friends who were fun to be with and who loved me for WHO I WAS and not HOW I LOOKED. The worst part was believing for many years that no guy would ever ever ever want to date me because--through junior high, high school and college--hardly anyone ever did. I cried many a night because I though I was worthless and could never be loved in that way. The junior prom--the senior ball--occasions of horror in a TS girl's mind--the horror of staying home, unasked, unwanted, alone. But I've always been prone to overdramatize my feelings, and somehow I survived still believing that I had something to give to the world, and something to give to that someone special still waiting out there for me. Well, I believe that God works miracles. He brought me through those high school years and believed in me even when I couldn't believe in myself. My faith kept me going and kept me smiling, kept me giving to my OT Patients, kept me sane through the master's of library science program. And lo and behold when I was almost 29 years old he brought Mark into my life. Mark has always loved me for ME and he has always made me feel beautiful and intelligent and treated me like a queen. I am truly blessed to have him. He knew about the TS from early on in the relationship but it didn't matter to him. We married and are building our life secure in our love for each other.
Today is Mothers Day as I write this and I guess that's a difficult day for a lot of us TSers. Motherhood for us is a long and difficult process--either adoption or special procedures to try for pregnancy. Mark and I are hoping to adopt someday. Though now it looks very difficult--financially pretty impossible at this point in time--I have faith that the God who has brought me through so much this far will bring another "Little Miracle" into our lives sometime down the road.
This has been a long essay but the point is to tell anyone with TS not to give up wherever you're at. Enjoy life for the beautiful thing it is, no matter what the circumstances. Believe in yourself for who you are, and focus on what you have not what you don't. Tell yourself every day that you are a BEAUTIFUL person inside and out, and have faith that God has something wonderful in store for you!!!! I'd be happy to email anyone who wants to talk about TS and feelings related to it, and to do anything I can do to help. You can contact me here
High school got lots better. I sang in a small ensemble. We were really good!! I made more friends, joined different organizations. When I found out I had TS, it was no real big deal except that I wouldn't be having children. Fortunately, my Mom was smart enough to let me know in no uncertain terms that giving birth did not automatically make you a mother, and that there were lots of kids that needed love.
I met my future husband in college and he didn't care that I couldn't have children. Our "miracle from God" practically fell into out lap. Matthew has Down Syndrome. We adopted him when he was 3 months old. We attended a meeting of prospective adoptive parents in September, turned in our application in October, were approved as a family in December and picked up Matthew in January. He is an incredible kid - 13 now. Puberty has hit him very hard and we are dealing with that. He wants so badly to be "one of the gang".
Our marriage didn't make it, but Matthew's dad is wonderful. He is there for him all the time, spends lots of time with him.
Health? I have high blood pressure, scoliosis, non-insulin-dependent diabetes, rheumatoid arthritis, have had a hip replacement, ear surgery. I don't hear very well. Sounds like I'm falling apart. Actually, I'm doing very well. Everything is under control, more or less.
How has TS affected my life? People don't take short people seriously. Sometimes I feel like I have to rant and rave to make my point. Spatial sorts of things (directions, right/left), organizational skills and math are problems. Sometimes I feel like I have to compensate and work so much harder than anyone else to accomplish a task.
I had never met another TS person in my life until 5 years ago. Accidentally, I discovered there were three of us living within 3 blocks of each other. That has been fun. I went to the TS convention in Denver, CO in 1992 and had a blast! It was so great to find hundreds of other women like me!
As I was growing up, my parents felt like they needed to protect me, so they sort of monitored my activities, and were very leery of my having many friends. I think they wanted to make sure the friends I had wouldn't hurt me, or end up making fun of me, or embarrassing me. They needed to meet the person's parents and little things like that. I think it back-fired, because I knew most of the school by the time I went to junior high.
I started going to the Children's Hospital in Ottawa when I was around 13. I went on the hormone therapy, and started to take an interest in what was really going on with me. Until then, I really didn't feel the need to know. My Mom and I went to a conferece, and got even more of a support group for me. I had a tough time dating, and getting to know guys. I just assumed they wouldn't be interested. My shell broke a little when I was around 17 or 18 years old.
The easist way I believe to help convey the emotions that go along with having Turner's, is to say that you have them all. Sometimes I'm angry about being only 4'8", and sometimes I am happy to have a supportive husband who is there to listen. Sometimes I am happy to be close to my family, and sometimes I'm envious that my sister has two beautiful children, because it's something I can't have - well, not on my own anyway.
Some people believe that we're only given things to deal with that we are capable of handling. If that is true, I know I would have to consider myself a fairly strong person, and I like that. Thank you for taking the time to read MyStory. Be well, Shirley.
I remember growing up always being small, but it never really bothered me, and my doctors weren't concerned about my height! It wasn't until I was in about 8th grade that I actually began to wonder "Is something wrong with me?" and it wasn't until my sister insisted I go to a doctor and have tests at age 18, that I was diagnosed, I got the results on my 19th birthday! I was actually relieved, however, with the diagnosis, I now some answers to the questions I had had for along time!
As far as the effects TS has had on me, I have to say I have been blessed with overall good health, and had no real problems in school, math was hard, and I didn't like it, but with the help of a supportive Dad, I made it through with a 3.0 in math and my overall GPA was a 3.8! I went on to college to recieve an AA in Early Childhood Education, and now work as a nanny!
Psychologically, I think the hardest blow having TS has had on me is the fact that the doctors tell me I won't have kids of my own, because I love kids. However, any guy who is worth it will be able to look past that, so it doesn't worry me too much!
I am currently one of the co-VP's of the Puget Sound Chapter of the Society, and am having a blast doing that, I am always here and ready to talk, if you want, you can reach me at email@example.com.
Back to Karen's Main Page
On to page 2 of Voices of Turner Syndrome