Spreading the word about Turner Syndrome

Spreading the word about Turner Syndrome

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Launched by the Turner Syndrome Society of the United States, February is Turner Syndrome Awareness Month.
The Turner Syndrome Society of the United States (TSSUS) has a goal of educating a half a million people of the condition.
“I was diagnosed at the age of twelve,” said Dr. Pamela Wright, English lecturer at Texas A&M University-Kingsville. “I had never heard of the disorder before then.”
Turner syndrome occurs in the DNA of cells.
“Most women have an XX karyotype, but women with Turner syndrome are either completely missing the second X or have some type of deletion in the second X,” said Wright. “This change in or deletion of the second X chromosomes can cause serious health issues, particularly with the heart and kidneys, and only two percent of affected fetuses actually make it to term.”
A rare condition with no known prevention, Turner syndrome only affects women.
“There are only about 60,000 women or girls with it in the U.S.,” said Wright. “This is out of a population of about 156 million women. Approximately 800 new cases are diagnosed each year.”
TSSUS was founded in 1987 and currently has 600 members and over 100 volunteers to support and maintain the organization’s programs.
“Once I knew about it and learned about the TSSUS, which wasn’t founded until I was a bit older, I quickly became a member and starting making friends within the Society, as well as attending conferences and support group meetings,”said Wright.
The nearest TSSUS support group can be found in San Antonio.
“I recently went to my first meeting of the group,” said Wright. “It was nice; TS is so rare that it can make you feel a bit isolated. Sometimes you can get frustrated with all the medical care required to stay healthy. It’s great to go to TSSUS meetings or conferences and be around other girls, women, and families who have had similar experiences.”
In order to raise awareness of TS by half a million million people, TSSUS asks that 25 people educate twenty-five people and urge those to educate an addition twenty-five.
“It is very important to increase awareness of this disorder because many health professionals don’t even know that much about it,” said Wright. “More awareness equals better support and better health care for [those] who are affected by TS.”
For more information on Turner syndrome and how to support TSSUS, visit www.turnersyndrome.org.