From 1938 to 2020: It's Time for Change - Turner Syndrome Foundation //

From 1938 to 2020: It’s Time for Change

Did you know that Turner Syndrome (TS) was first discovered in 1938? It might be hard to believe, given that, after 80 years, there is still a lack of awareness, research, and support for the TS community. Take a look at the history of TS and how you can help be part of needed change.

Discovery of Turner Syndrome

In 1938, Dr. Henry H. Turner announced his discovery of TS to the world at an Association for the Study of Internal Secretions meeting. Dr. Turner was an endocrinologist, a doctor who studies how the body makes substances that are transferred via the body’s blood as well as its disorders and structures.

At the meeting, Dr. Turner discussed his endocrinology journal paper titled A Syndrome of Infantilism, Congenital Webbed Neck and Cubitus Valgus. It was about his study of seven female patients: one adult and six children. These patients displayed what would later become some of the classic (more well-known) health challenges of TS, including short stature and webbed necks. They also had other health challenges that affected them physically, mentally, and emotionally. During this study, he also discovered the importance of estrogen therapy and how it helped females with TS develop sexually (experience regular puberty, develop breasts, etc.). This is important, since this is a common health challenge for females with TS.

Dr. Turner made history with his discovery and later went on to publish over 30 works, win several scholarly awards, participate in medical societies, and more. To learn more about Dr. Turner, click here.

Timeline of Turner Syndrome Research and Treatment

  • 1938: TS discovered by Dr. Turner
  • 1942: First estrogen treatment introduced
  • 1958: Growth Hormone Therapy (GHT) created
  • 1981: rGH (manufactured GH therapy used today) discovered by Genentech
  • 1994: International Symposium on TS makes first recommendations on how to diagnose TS
  • 1997: GHT certified by the FDA to be used to treat TS
  • 2000: International Symposium on TS made new recommendations for TS diagnosis
  • 2008-2009: Turner Syndrome Foundation (TSF) created
  • 2010: First national TS awareness month ever
  • 2013: NJ has first designated TS awareness month, thanks to TS advocate Kym Hall and TSF
  • 2017: New clinical guidelines on how to treat and diagnose TS,  published by the International TS Consensus Group
  • 2020: Nine states have designated TS awareness months, 24 states have designated TS clinics, and TS awareness is still low in America

From 1938 to Now: Where Is the Awareness?

It has taken far too long for awareness efforts for TS to begin. Even care guidelines and treatments have evolved slowly and still have a ways to go. There is still little recognition of TS. Less than half of U.S. states have TS clinics and designated TS awareness months, even though TS affects 1 out of 2,000 female births.

Even though TS was discovered over 80 years ago, we still face challenges of delayed diagnosis, lack of physician knowledge, and absence of research. Despite being discovered 80 years ago, longer than we have known about other conditions like autism and Down’s Syndrome, most people still don’t know about TS.

You Can Make a Difference!

However, this does not have to be the case, and you can help. It is time for resources and support for all individuals with TS. It is time to lower the age of diagnosis and to advance research for the understanding of and treatments for TS. We must advocate so that change is possible. We ask that you consider the following ways to get involved in and support TSF’s efforts. Together we can make a change!

The lack of awareness of Turner Syndrome has gone on for too long. We need YOUR help to change the future for the Turner Syndrome community. Donate, fundraise, volunteer, or advocate to create a better world now and beyond! Together, we will be Turner Syndrome Strong in 2021!

Written by Elizabeth Rivera, TSF blog writer from TSF’s Communications Department. Edited by Susan Herman, TSF volunteer blog post editor and translator.


Sources Used To Write This Article:

TSF Website-What is Turner Syndrome?

TSF Website-Symptoms of Turner Syndrome

TSF Website-Social Anxiety

Healio’s Endocrinology Section-Henry H. Turner, M.D.: The Man Behind Turner Syndrome

Merriam Webster Dictionary-Infantilism Definition

Merriam Webster Dictionary-Endocrine Definition

Merriam Webster Dictionary-Endocrinology Definition

The Controversial History of Hormone Replacement Therapy

History of Growth Hormone Therapy

Medscape- Turner Syndrome: Toward Early Recognition and Improved Outcomes

Clinical Practice Guidelines for the Care for Girls and Women with Turner Syndrome-2016 Cincinnati Meeting

TSSUS-About Us

TSF-Who we Are

Turner Syndrome Global Alliance-About Us

TSSUS-Turner Syndrome Awareness Month

TSF-New Jersey

States with Bills for TS Awareness Month

TSF Website-Fundraising Page

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