THE CHRONICLE-JOURNAL
Women living with a rare genetic condition shared stories and information in Thunder Bay on Saturday.
Turner syndrome, a genetic disorder affecting roughly one in 2,500 women, has a wide range of physical symptoms including short stature and absence of hormonal development during adolescence.
The Turner Syndrome Society of Canada held an information session about the syndrome at the Thunder Bay Regional Health Science Centre.
The session included talks by medical experts, and also gave women living with Turner syndrome a chance to network and share stories.
Mary Edwards, a woman with Turner syndrome and the society’s executive director, said that six adult women and four families in the Thunder Bay Region have contacted the society. “You’d expect somewhere around 20 individuals to be affected in the Thunder Bay Area, so we probably know a fair proportion of them,” said Edwards. “But across Canada in general, we’re not doing that well.”
Edwards said that shyness often stops affected women and girls from trying to learn more about the syndrome and its symptoms.
For those who do contact the society, said Edwards, individual information needs can vary widely. “Parents whose little girl has just been diagnosed want information about everything to do with this condition . . . and teenage girls are concerned about their development,” said Edwards.
Edwards said that modern advances in estrogen and growth hormone replacement therapy can help girls and women to better manage the symptoms of Turner syndrome, and that organizations like the society can provide social support and access to information.
Another information session is planned to come to the region near the end of February 2009, and the society’s annual conference is in April 2009 in Vancouver.
