Connective Issues Winter 2023

FOR LINCOLN Hope

By Julie Taubert, Glendale, AZ When our 12-month-old, Lincoln, was diagnosed with Loeys-Dietz syndrome, the first thing we and all of our providers thought was - what is Loeys-Dietz syndrome and how do we treat it? A few said, “It’s like Marfan syndrome, right?” We

heart medication with his cardiologist and, based on published studies, why higher doses are needed in LDS patients. I have been able to put some of my fears at ease after reading about common and uncommon manifestations of LDS type 2. Having research available also meant that I was aware of things to watch out for and what we should be concerned about. described in 2005, ave been made in

Since LDS was first h d h great strides understan how to and f dia k

quickly learned through li from previous conference Foundation’s YouTube ch it was similar, but there ar critical di ff erences. We learned that, in LDS the aorta has a lower threshold for dissections and ruptures, and there c be GI problems, allergies, additional skeletal problems, and more. As a parent, you want to make sure you are doing everything in your power to keep your child as healthy as possible. It was overwhelming to lear about Lincoln’s diagnosis and also learn that we had help educate our son’s pr about his condition and w they should get the most information. I took a copy of the Loe , a

stening to lect e s a e ur s on the nnel that some

ing the condition and elp make lives longer ller for people who are nosed with LDS. We ow what types of exercise re appropriate and what medication will stabilize or slow the progression of aortic growth. And with the latest research into an LDS biomarker (see related article on page 12), we may get to witness a whole new way o monitor and treat those ith Loeys-Dietz syndrome. We are thankful for all people who work hours d trying to find answers many questions that S families daily. The future nd full of hope for the u g t w n n a

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to viders ere p-to-date

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D a Loe s-Dietz commu on e to the plague L looks bright

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y nity, thanks to all of the wonderful people who dedicate their lives to finding answers about LDS. With all of the amazing research that has been done on LDS, we are able to keep our Lincoln as healthy as possible.

syndrome: A primer for diagnosis and management to our pediatrician, who had not heard of LDS. That resource gave her a basis for aiding in our son’s care. We also discussed the correct dosing of Lincoln’s

To support the life-saving work of the Loeys-Dietz Syndrome Foundation, visit https://bit.ly/SupportLDS.

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Winter 2023