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"Your child's care team may include physicians from several disciplines, all of whom have experience treating children with the various symptoms of Loeys-Dietz syndrome."
– Joan M. Stoler, MD, Boston Children's clinical geneticist
When your child has a rare medical condition, it can be especially challenging. Parents often have a harder time finding accurate information about the symptoms your child might be suffering from, as well as what medical treatments are available.
If your child has been diagnosed with Loeys-Dietz syndrome, you probably have a number of questions. At Boston Children’s Hospital, we have the answers you’re looking for.
Here’s what you need to know about Loeys-Dietz syndrome and how it can affect your child:
At Boston Children’s we focus on the whole child, not just his condition—that’s one reason we are frequently ranked as a top pediatric hospital in the United States.
We specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs.
Loeys-Dietz syndrome is a complex condition, and no one specialist is equipped to treat your child for all his symptoms.
Your child’s care team may include physicians from several disciplines, such as genetics, ophthalmology, orthopedics, plastic surgery, general surgery and cardiology who have experience in treating kids with the varied symptoms of Loeys-Dietz syndrome.
We’re also continually involved in research with physicians and researchers in other institutions in an attempt to provide the most up-to-date and effective care for children with Loeys-Dietz syndrome.
Loeys-Dietz syndrome is very similar to Marfan syndrome. In fact, until recently Loeys-Dietz was called “Marfan syndrome type 2.” However, there are some differences in both the symptoms your child might have, as well as the way in which we treat them.
Here’s an especially helpful page put together by the National Marfan Foundation. Near the bottom of the page, there’s a link to a publication that details the differences between Marfan syndrome and Loeys-Dietz syndrome.
We’re known for our science-driven approach — we’re home to the most extensive research enterprise located in a pediatric hospital in the world, and we partner with a number of top biotech and health care organizations—but our physicians never forget that your child is a child, and not just a patient.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”