Since Turner syndrome was first described in 1938, pediatric endocrinologists, cardiologists and other specialists have done extensive research to better understand the disorder and improve quality of life for patients. Many advancements in the treatment of the disease have been made; at present, for example, growth hormone therapy can increase final adult height in women with Turner syndrome…Cardiovascular problems in Turner syndrome are a major concern | Endocrine Today
MRI – According to Paul H. Saenger, the sensitivity of MRI in the detection of cardiovascular problems in patients with Turner Syndrome is superior to echocardiography. “Therefore,” Saenger said, “an MRI is the method of choice for all patients past the age of 10 years.”
-Endocrine Today news article above
The Turner syndrome Foundation is deeply committed to saving lives. The TSF Council on Cardiology assembled to improve cardiovascular diagnostics, management and surgical interventions for patients with Turner Syndrome. An educational activity, ‘Strategies for Improving the Management of Cardiovascular Issues Seen with Turner Syndrome’ for medical professionals. This activity was created by professionals volunteers and generously funded by charitable donations.
The Turner Syndrome Foundation’s Emergency Contact Card has been designed to allow for an individual’s peace of mind. Patients and caregivers who carry a medical identification card can feel they have a layer of protection to shield from mishandling should there be aq medical emergency. The ECC will provide first responders with critical medical information. With an identification card in hand, a healthcare professional aware of this condition can direct care strategies and possibly save lives.
The Heart in Turner Syndrome Printable PDF
Leo Lopez MD
Director of Pediatric Cardiac Noninvasive Imaging
Children’s Hospital at Montefiore
Associate Professor of Clinical Pediatrics
Albert Einstein College of Medicine
To read more about cardiovascular health, scroll to page(s) G25-G31 in the Clinical Guidelines found here: https://turnersyndromefoundation.org/wp-content/uploads/2017/07/Clinical-Practice-Guideslines-International-G1-2017.full_.pdf
American Heart Association Statement- Cardiovascular Health in Turner Syndrome
Event Type:
All
All
Advocacy
Community
Corporate
Education
Fundraiser
Fundraiser
research
research
Team TSF
Virtual
State:
All
All
Arizona
California
Colorado
Delaware
Florida
Georgia
Illinois
Louisianna
Missouri
Nebraska
Nebraska
Nevada
New Jersey
New York
North Carolina
Pennsylvania
Tennessee
Texas
Virginia
Virginia
Washington
Washington DC
Event Location:
All
All
13 and Market, St. Louis, MO
Anderson Point Park Small Picnic Shelter
Buffalo Wild Wings
Capitol Hill
Cedars-Sinai Medical Center
Clarks Creek Greenway
Eno River State Park
Harris Middle School
Hyatt Regency
Kiawah Island Golf Resort
Los Angeles, CA
LSU Pete Maravich Assembly Center
McGovern Medical School in the University of Texas Medical Center
Monmouth Park
Monmouth Park & Oceanfront Promenade
Munroe Meyer Institute
Online
Peltier Park
Red Bull Arena
Red Mill
Road Runner Sports
Secaucus Public Library
Snyders Park
Snyders Park, Fort Lauderdale, FL
SoulCycle
St. Joseph's Children's Hospital
The Brownstone
The Children’s Hospital at Montefiore
The Salted Rim
Times Square
Tupelo Honey
Turner Syndrome Foundation- NJ
UTH Health Houston
YMCA Camp Ockanickon
Ynot Italian Restaurant
Yo Factor
Zacharias Park
2023thu23mar8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
2023thu30mar8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
Theme: Organization by Organic Themes.
©2022 Copyright Turner Syndrome Foundation - All rights Reserved.