Loeys-Dietz Syndrome:

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The web site itself may have changed. You can check the current page or check for previous versions at the Internet Archive.Yahoo! is not affiliated with the authors of this page or responsible for its content.Loeys-Dietz Syndrome:22 Manhasset AvenuePort Washington, NY 11050516-883-8712800-8-MARFAN516-883-8040 (fax)www.marfan.orgPeople with Loeys-Dietz syndrome (LDS) need special medical care and management. The
most important care involves the cardiovascular systemthe heart, the aorta (the main
blood vessel that carries blood from the heart) and other blood vessels. Here are ways to take
care of the heart and blood vessels in a person with LDS:TMMedications (drugs) that lower heart rate and/or blood pressure might help prevent
bulging or tearing of blood vessels. Doctors often use medications called beta blockers to
treat LDS in this way. They can use medications called calcium channel blockers when a
person cannot take a beta blocker.Some blood pressure medications called angiotension receptor blockers (ARBs) may also
help treat LDS in other ways. We need more research to learn more about how and
whether ARBs can treat LDS. While we are waiting for more information, some doctors
are using an ARB called losartan to treat LDS. Losartan is FDA-approved for lowering
blood pressure, and the risks of using it appear low while the potential benefit appears
high. You should talk with your doctor about using losartan to treat LDS.M()People with LDS should have:An echocardiogram to check the valves of the heart and the part of the aorta closest to
the heart at least once a year.Either a CT or MRI angiogramwith contrastof the head, neck, chest, abdomen
(stomach area) and pelvis (lower stomach area just above the legs) on a regular basis. How
often to have these scans depends upon the initial findings (results of your first scan.)
The scans are looking for aneurysms and/or dissections (tears) in any of the arteries in
the head, neck, chest, abdomen and pelvis.Some people with LDS need to be checked more often than once a year. How often to have
an echocardiogram and the scans depends upon the size of any aneurysms and how fast they
are growing. Larger and faster growing aneurysms need more frequent monitoring.G,,Most people with LDS can and should be physically active, but should not exercise to
the point of becoming exhausted. As a general rule, while exercising, you should be able
to comfortably talk with another person without needing to take breaths in the middle
of short sentences.Try walking and gentle hiking, bike riding or swimming as safe ways to stay physically
active.Loeys-Dietz Syndrome:How to Care for Cardiovascular ProblemsServing the needsof people withMarfan syndromeand related disordersEducationResearchSupportoverYou should not do exercises such as weight lifting, push-ups, chin-ups and sit-ups or other
exercises that strain your muscles.You should avoid contact sports such as football and basketball or any other activity where
there is a high risk of a sharp blow to the head or chest.Based upon the size of blood vessels or instability of the neck, some people with LDS need to
be even more careful and gentle when exercising.H()Most people with LDS can be helped by planned vascular surgery. This means having surgery to
remove aneurysms before they cause a life-threatening dissection (tear) or rupture. This is a very
important part of LDS care.The most common vascular surgery is replacement of the aortic root (the part of the aorta
closest to the heart).Doctors can use the size of an aneurysm, how fast the aneurysm is growing, where the aneurysm
is located, and/or family history of early dissection or rupture to decide when it is time to perform
vascular surgery.Vascular surgery is generally very successful in people with LDS.Keep in mind that replacement of the aortic root is also done in people with other connective tissue
disorders, especially for Marfan syndrome. Using Marfan guidelines to decide when to do surgery in
a person with LDS can be dangerous, however, because aneurysms in people with LDS can tear or
rupture at smaller sizes and at younger ages.TYDLDS is not the same for everyone with the disorder. Some people have more medical problems than
others. Therefore it is very important to talk with your doctor about what care is right for you.TL-DSCall the National Marfan Foundation (NMF) Resource Center at 1-800-862-7326 ext. 26.
When you call, you will speak with a nurse who can answer questions and also suggest ways to
find a doctor who knows about LDS.Read the other NMF fact sheets on LDS. They have more information on LDS features, how
LDS is different from Marfan syndrome and how LDS is diagnosed. They are available on-line
at www.marfan.org or from the NMF Resource Center.Go to the Loeys-Dietz Foundation website at www.loeysdietz.orgCardiovascular ProblemsContinued from other sideMay 2008

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