Loeys-dietz syndrome in children

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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:

  • Loeys-Dietz syndrome is a relatively rare congenital (present at birth) condition that affects the formation of your child’s connective tissue.
  • The main concerns for children with Loeys-Dietz syndrome are the development of aneurysms of the arteries, such as of the aorta, which result in weakening of the affected blood vessel. They can be fatal if they’re not treated.
  • Because there’s no cure for Loeys-Dietz syndrome, doctors focus on monitoring the development of these aneurysms, treating them medically and if necessary, surgically repairing the aneurysm, as well as managing your child’s other symptoms in order to allow your child to lead a healthy life.

How Boston Children’s Hospital approaches Loeys-Dietz syndrome

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.

  • While there’s no cure for Loeys-Dietz syndrome, we have many methods of managing your child’s symptoms—and helping your child have a happy childhood and go on to live a healthy, productive life.

Our multidisciplinary team

Loeys-Dietz syndrome is a complex condition, and no one specialist is equipped to treat your child for all his symptoms.

  • That’s why at Boston Children’s, we have an innovative multidisciplinary approach to treating children with Loeys-Dietz syndrome.

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.

Marfan syndrome. Loeys-Dietz syndrome. What’s the difference?

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.

What makes Boston Children’s different

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.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

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