"When Was Your Last Period?”: A Few Things to Consider When Seeking Adult Care for Turner Syndrome

[The Stage is on Fire] is a page-turner in which, much like life, there are no easy answers and yet each step of the journey yields insight and hope. This work of heart must not be missed!

Melanie Faith

Creative Writing Teacher, Essayist & Poet.

Katie Steedly’s first-person piece [The Unspeakable Gift] is a riveting retelling of her participation in a National Institutes of Health study that aided her quest to come to grips with her life of living with a rare genetic disorder. Her writing is superb.

The Society of Professional Journalists

In recognition of receiving the Dateline Award for the Washingtonian Magazine essay, The Unspeakable Gift.

I thank you … It is the authenticity of your “class notes”; and it is the delicacy and skill with which you present the nuances of classroom life and the actuality of your students’ and fellow teachers’ lives.

Maxine Greene

Philosopher and Education Scholar

Enter your email here to receive Weekly Wide-Awake

back

“When Was Your Last Period?”: A Few Things to Consider When Seeking Adult Care for Turner Syndrome

Living with Turner Syndrome

I live with Turner syndrome. I was diagnosed at the age of 15. I am now almost 48. I saw the same Ob-Gyn, who guided me through my diagnosis and follow-up care from specialists, from the age of 15 to 37 when I participated in a Turner syndrome study at the National Institutes of Health. Since then, I have had to find health care across the far corners of the United States. I have had the Turner syndrome conversation more times than I care to recall. Inevitably, the first question asked by medical professionals during most doctor’s appointments is, “When was your last period?” This introduces the discussion of Turner syndrome and hormone replacement therapy immediately into our conversation. It also reveals how little, in general, the medical establishment knows about the condition. Perpetual education is part of the process. Experience has provided insight into how to navigate the confusing and frustrating waters of adult Turner syndrome health care.