Anemia in the pediatric patient

School Nurse Using Turner Syndrome Diagnosis To Inspire Others

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OpinionHow Turner Syndrome Inspired Me To Join The DI's DEI ...

I joined The Daily Iowan's Diversity, Equity, and Inclusion Committee because I have an overlooked and poorly portrayed condition.

Ally Pronina, Opinions ColumnistApril 18, 2021

Turner syndrome led me to one of the most impactful experiences. Having a medical condition that media organizations often overlook or misrepresent is what inspired me to join The Daily Iowan's Diversity, Equity, and Inclusion Committee. Turner syndrome is rarely in the media and is not portrayed well when it is.

WPLG Local 10 did a story about a girl with Turner syndrome and a serious heart defect. The headline, "Potentially deadly syndrome affects only females," is misleading. Heart conditions, which are common with Turner syndrome, are serious. However, Turner syndrome is not a terminal disease. Calling it a deadly syndrome makes it seem like clickbait instead of being accurate.

This is why it's important to have diversity training like ones the DI has held, which emphasize the importance of doing research when writing about identities we ourselves do not have. If the journalist had asked a source or researched the average life expectancy of someone with Turner syndrome, this mistake could have been avoided.

Commentators even made religious and political jokes on the story. Those jokes aren't necessary. People with Turner syndrome go through many serious and scary medical procedures, requiring utmost courage. I've been told at 18 years old I would probably need open heart surgery and took a daily growth hormone for years.

People who choose to tell their story deserve respect instead of jokes. Turner syndrome needs to be portrayed more accurately so there is an understanding of it.

Law and Order SVU had a character with Turner syndrome. The show said people with Turner syndrome are trapped in the bodies of children. This type of rhetoric is harmful to the mental health of people with Turner syndrome who are already self-conscious about being short, looking a couple years younger, and their body developing slower than that of their peers. Even if I don't look 22, I'm a legal adult. My body is that of one.

This is why it's valuable the DI's DEI team is willing to talk about how to make coverage more inclusive of all people — including those with disabilities. The first step towards fixing these portrayals is journalists being willing to listen and learn like the DI is.

People with disabilities are often overlooked in the media and diversity discussions. I'm blessed beyond words to have a DEI committee which has not overlooked and sees the value behind the stories of others like me.

Our DEI team's mission statement of giving a voice to underrepresented communities has a special place in my heart because it shows nobody should be embarrassed about an identity they have. I used to be embarrassed to talk about Turner syndrome to even my closest friends.

We refer to a style guide, which is based on a University of Iowa-developed style guide, with terms not to use and not use when referring to certain groups of people. Adjusting our vocabulary is not just about political correctness but showing people you genuinely care about them.

I'm thankful for a platform to share my story and a DEI team which shares my passion for fixing portrayals of Turner syndrome and other identities. Accuracy and respect are vital because we're all valuable and newsworthy human beings with stories worth telling.

Columns reflect the opinions of the authors and are not necessarily those of the Editorial Board, The Daily Iowan, or other organizations in which the author may be involved.

 

Fracture Rate In Turner Syndrome Comparable To Healthy Adolescent Girls

January 05, 2018

2 min read

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Ondrej Soucek

Girls with Turner syndrome treated with recombinant human growth hormone and estrogen therapy do not have an increased risk for fracture incidence vs. Girls in a healthy population, according to findings from a 6-year prospective study.

"Based on our estimate of fracture incidence in healthy controls, the observed girls with Turner syndrome who sustained fractures during the 6-year follow-up was completely expectable," Ondrej Soucek, MD, PhD, of the department of pediatrics at Charles University and Motol University Hospital in Prague, told Endocrine Today. "This finding was further supported by the fact that the calculated bone strength of the radius, as assessed by peripheral quantitative computerized tomography, was comparable to the reference, when the decreased body height of girls with Turner syndrome was taken into consideration."

Soucek and colleagues analyzed data from 32 adolescent girls with Turner syndrome (confirmed with genetic testing) participating in a previously published study using peripheral quantitative CT. Within the cohort, 15 girls were prepubertal (Tanner stage I breast development), 14 were pubertal premenarcheal and three were postmenarcheal. Six girls developed spontaneous puberty; 24 girls with primary amenorrhea and two girls with secondary amenorrhea were treated with oral estradiol to induce puberty. All were treated with recombinant human GH at a median dose of 50 µg/kg per day; postmenarcheal girls finished their GH therapy less than 8 months before their first densitometry assessment. Girls underwent bone scans at baseline and 2, 4 and 6 years, with researchers measuring total bone mineral content, total bone cross-sectional area and trabecular volumetric bone mineral density and polar strength-strain index at the distal radius. Researchers assessed fracture incidence via questionnaires. For peripheral quantitative CT-derived bone parameters, researchers used age-specific reference values for bone density and geometry parameters from a control group of 185 healthy girls from the DONALD study in Germany. Primary outcome was fracture occurrence.

During 6 years of follow-up, three girls sustained four fractures, all from falls. Researchers determined that the fracture rate among girls with Turner syndrome was not higher than the downward-biased fracture rate estimate in the age-matched healthy controls (P = .48).

Among girls with Turner syndrome, trabecular BMD z score decreased with age (estimate, –0.21; P < .001); however, total bone CSA correspondingly increased (mean, 0.16; P < .001), which led to normal bone strength, according to researchers. A positive history of incident fractures was not associated with any bone parameters, they noted.

"Even though trabecular vBMD decreased during puberty, total bone [cross-sectional area] increased and led to normal calculated bone strength at the metaphysis of the radius, which supports the finding of a 'common' fracture rate in [Turner syndrome]," the researchers wrote.

"Despite that our study was not designed to evaluate the influence of the treatment, we believe that the current standard of care (growth hormone and estrogens) might be the crucial factor 'normalizing' the bone phenotype in Turner syndrome," Soucek said. "Our deduction is based on the finding that the longer the growth hormone treatment, the higher the cortical bone mineral density at the diaphysis of the radius. This can be seen as another reason for appropriate hormonal treatment in Turner syndrome." – by Regina Schaffer

For more information:

Ondrej Soucek , MD, PhD, can be reached at Charles University and Motol University Hospital, Department of Pediatrics, Second Faculty of Medicine, V Uvalu 84, 15006, Prague, Czech Republic; email: ondrej.Soucek@lfmotol.Cuni.Cz.

Disclosures: The authors report no relevant financial disclosures.

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