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The Bond of "Butterfly Sisters" by Renee Nowacki

I am one in 2,000-4,000. I am one of the 2% of babies with Turner syndrome (TS) who are born alive. My TS story actually starts before I was diagnosed. In my 10th grade biology textbook, there was a section about Turner syndrome. It explained that TS is a condition affecting only females where they are missing all or part of one of their X-chromosomes. It listed some characteristics: “short stature,” I thought that sounded like me. “lack of development of secondary sexual characteristics,” that also sounded like me. “Mental retardation.” That did not sound like me. I had always done well in school. That piece of misinformation is what kept me from diagnosing myself.

The following school year (1987-1988), Mom convinced me to visit the doctor about not having gone through puberty yet. They drew blood for the karyotype test. They found that I had TS, but some questions remained. I had more blood drawn. They learned that I had one of the rare forms of TS that put me at greater risk of gonad blastoma that can lead to ovarian cancer. The summer before my senior year, I had my ovaries removed. They found a gonad blastoma. Fortunately, it seems to have been precancerous and has not returned.

For a while, the diagnosis was a shock. Just knowing that something was different about me was hard. Then there were all the tests to be sure I didn’t have the kidney and thyroid problems that can be associated with TS. Now, one of the more difficult things to deal with is the infertility. In college, I tried to learn more about it and even did a psychology paper about it.

I grew up in Chaska, Minnesota, a suburb of the Twin Cities. I moved to Nebraska in 1996 when my dad’s company transferred him. I started to get involved with the Nebraska TSSUS Turner Syndrome Support Group. That has been a wonderful experience. I have had the opportunity to attend a few conferences of the Turner Syndrome Society of the United States (TSSUS). It was at one of the TSSUS conferences that I learned I had the bicuspid aortic valve often associated with TS and am being followed for that. I also am a member of a few Turner syndrome groups on Facebook. I have learned so much from these experiences and have enjoyed the bond we “butterfly sisters” have.

It is amazing to see the similarities and differences in our stories. Some of us were lucky enough to be diagnosed at birth or even in utero and had the benefit of growth hormone. Some of us like me were diagnosed as teens. Some were not diagnosed until well into adulthood. There are good and bad parts about having been diagnosed later. One of the positives is that I didn’t have an excuse for any difficulties I was facing academically or socially. I just had to keep trying and work through them. The teasing I experienced for my short stature was just the teasing all children experienced. The difficulties in certain areas of math just needed more practice to overcome. Everyone has difficulties. These were mine.

The negatives include not being able to receive growth hormone. Although with my hatred of needles that may be a good thing. It also means a delay in learning about TS and connecting with my “Butterfly Sisters”. I will always wonder how things would be different if I had been able to meet more girls with TS at a younger age. I watch the young girls at the TSSUS National Turner Syndrome Conferences and am amazed at their confidence and enjoy seeing the friendships they are making.

I graduated with a B.A. in French with a minor in Spanish. I have worked as an educational sign language interpreter. I graduated with a person who is deaf and was fortunate to learn a few signs from her interpreter after school. I am rather shy and wish I would have taken the wonderful opportunity to chat more with my classmates. While interpreting in Kearney, Nebraska I was able to participate in a distance learning program for in-service educational interpreters and receive a certificate in educational interpreting. In March 2013 I graduated summa cum laude with an A.A.S. in paralegal studies.


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