Blog
Did You Know?
Did you know that Loeys-Dietz syndrome (LDS) patients can have vision and eye problems? Hypertelorism (widely spaced eyes) is a typical characteristic of LDS, while myopia (difficulty seeing from afar) and strabismus (misaligned eyes) are common issues — What is a Magnetic Resonance Angiogram (MRA)? It is an imaging tool that uses a magnet and radio wave pulses to produce pictures of the arteries in the body. Contrasting agents may or may not be used.
#GivingTuesday
This Giving Tuesday, join us in building a better tomorrow! On Giving Tuesday, November 29th, communities come together to do good. Get involved in the Loeys-Dietz syndrome (LDS) community by donating, volunteering, or subscribing to our newsletter! Or, get involved on social media by following our Facebook, Instagram, Twitter, Youtube, and LinkedIn. Donate today We need your help to fund essential programs and to support people living and working with LDS. Every dollar counts, and no donation is too
Loeys-Dietz Syndrome and Inflammatory Bowel Disease
What is Loeys-Dietz Syndrome? Loeys-Dietz syndrome (LDS) is a rare genetic disorder that affects the connective tissue in the body. The disorder was first described in 2005 by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine. LDS is caused by a mutation (change) in either the TGFBR1 or TGFBR2 genes (transforming growth factor beta receptor 1 or 2), the SMAD2 or SMAD3 genes (mothers against decapentaplegic homolog 2
2022 Recipients of the First LEAP Impact Award
FOR IMMEDIATE RELEASE The Loeys-Dietz Syndrome Foundation Canada is proud to announce the 2022 recipients of our first LEAP Impact Award. Congratulations to Nairy Khodabakhshian, Dr. Pei-Yu Chen, Dr. Michelle Keir, and Dr. Gauri Karur! Loeys-Dietz syndrome (LDS) is a rare genetic vascular disease that was recently identified in 2005, and consists of malformations in the connective tissue. Patients with LDS may present with varied pathological manifestations in the aorta of the heart, lungs, skeleton,
How to Transition from Pediatric to Adult Care with Loeys-Dietz Syndrome
8 min. read Transitions in medical care can be common for individuals and families living with Loeys-Dietz syndrome (LDS) or other complex or chronic conditions. Transitions may include changes in care intensity, medical centres, geographies, specialists, as well as from pediatric to adult services. The transition from pediatric to adult health care can raise a lot of questions including, “what should I expect when my child transitions?” and “what do experts recommend doing?”. Keep reading
School and Loeys-Dietz Syndrome: Guidance for Families, Educators, and Students
6 min. read How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS? As the school year approaches, LDS families have questions. Keep reading to find answers and: A new, informative LDS School Packet; Accommodations for students with LDS; Information about LDS and neurological conditions that may impact a student’s ability to succeed at school – including neurodevelopmental challenges, learning difficulties, attention deficit disorder (ADD),