As a child Shirley Underwood was used to being teased and called ‘shorty’. In grade nine she was diagnosed with Turner Syndrome (TS), a condition that affects one in 2,500 girls.
They are missing part of an x-chromosome, but although this comes from the paternal side, only females are affected. In addition to diminished height, there are health concerns including heart disease, hearing or vision impairment and infertility.
Shirley, who lives in the Beach with her husband and son, is just completing a two-year term as president of the Turner Syndrome Society of Canada. From May 25 to 27 members from Victoria to PEI and all points in between are holding their 31st annual convention at the Novotel Toronto Centre. The City of Toronto has declared May 25 Turner Syndrome Awareness Day. At the Saturday night banquet the Malvern Jazz Band will entertain the diners.
Because TS is a relatively rare condition, isolation can be an issue, and the annual convention is an occasion for TS girls and women to get together and compare notes. They also advise the parents of TS daughters who want to know what to expect, whether growth hormones should be used, what resources are available, where the doctors are who understand the syndrome, and the answers to questions about relationships.
Underwood grew up with five siblings. No one in her family has TS as it is a random, not a genetic, condition. Her father was a minister and the family lived in parishes all over Ontario. She was never allowed to get away with anything because of her height.
“If you can’t reach it get a chair,” they told her.
Nevertheless her family have been her biggest supporters and they encouraged her to pursue her great passion, music.
“The secret of happiness is to find your passion and not lose it because you are a bit different,” she said.
Her soprano voice is her instrument. As a child she sang before she talked. She had 20 years of voice training and has performed with numerous choirs and groups, as a soloist or as part of an ensemble. Some may remember her as Dorothy singing Somewhere over the rainbow at a Beach Couples Club show. For several years she was musical director for the club’s annual show. Shirley and her husband Richard are currently the club presidents.
Shirley was a JK -grade 8 teacher, and for a time she taught at Balmy Beach School. She was the music consultant for the Toronto Board of Education before amalgamation. Since retirement she has had more time to serve the TS Society.
July 30 will be Lilac Day, when members try to spread the word about TS. So if on that day, you see a woman of short stature in a lilac dress on Queen Street, chances are Shirley is promoting Turner Awareness. For more information visit turnersyndrome.ca.