Daniel

In 2011, Daniel Moyer passed away at the age of 30 of vascular complications associated with the diagnosis of Loeys-Dietz syndrome. After undergoing initial aortic root repair at a young age, he experienced an aortic dissection at 17 years of age in the ungrafted portion of the aorta. Subsequently, he had undergone multiple surgical interventions for aneurysms throughout the arterial tree. Daniel was a passionate advocate for appropriate healthcare and rehabilitation services for those impacted by aortic aneurysms.

Here is Daniel's story, in his own words, as shared before his passing.

The first signs of Loeys-Dietz syndrome (LDS) were the hernias I had when I was 3 weeks old and 5 months old.  Then when I was 6 years old I had a surgical repair of my pectus excavatum.  It was noted during this surgery that my joints were very flexible (hypermobility) as I laid on the operating table.  This had the surgeon question if I had Marfan Syndrome and encouraged further examination.  A slit lamp ophthalmological exam was performed to determine if I had dislocated lenses, a common feature of Marfan syndrome, however it was found that I had no ocular issues so I was not diagnosed.  Then when I was 7 years old I had my fourth hernia and by that time my mother was the one who finally convinced my pediatrician that I should be formally checked for Marfan syndrome.  So in February of 1989 I had an examination at Johns Hopkins Hospital by Dr. Victor McKusick.  After the examination and an echocardiogram it was determined that I met the criteria for Marfan syndrome and since LDS was not discovered yet, I was formally diagnosed with the best diagnosis of the time.  Initial treatment involved medication, limits on physical activity and regular echocardiograms and MRI testing.  By the age of 9 my aortic root had expanded to 5 cm with associated aortic valve insufficiency and I was experiencing chest pain.  So I underwent an aortic root replacement with a composite valve graft.

From age 9 to 17 my health was fairly stable and I stayed out of the operating room.  However, with hypermobility I was prone to sprains, dislocations, and broken bones.  I was also followed for scoliosis during my teen years, although no intervention was needed.  Then at the age of 17, I presented to my school nurse with radiating pain in my abdomen.  The pain was the result of an acute dissection of the ungrafted portion of my aorta.  Emergency surgery involved graft replacement of the distal ascending aorta and transverse aortic arch, which prevented aortic rupture.  Over the next 10 years I underwent 7 more cardiovascular procedures to treat rapidly progressive aneurysms, dissection and tortuous vascular disease involving the aortic root and arch, thoracoabdominal aorta, and the brachiocephalic, vertebral, left internal carotid, internal thoracic, iliac, and superior mesenteric arteries.

In 2006 my surgical team in Houston questioned my diagnosis of Marfan syndrome and felt that the newly discovered Loeys-Dietz syndrome was a more accurate diagnosis.  Through genetic testing it was confirmed that I had Loeys-Dietz syndrome.