Advances
Advances in surgical and clinical methods are rapidly being developed for management of the complications involved with Loeys-Dietz syndrome. Studies that have evaluated past medical histories of individuals with LDS revealed early ages for first cardiac surgery and average age of death. While these seem like frightening statistics, the cases presented in this study were representative of retrospective medical information . As well, in the recognition of a new syndrome, it is often the most severe cases that first come to medical attention. The first cases also do not reflect the current rise in success in the treatment of individuals with LDS, including aggressive surgical intervention and comprehensive imaging. As more individuals are being diagnosed with LDS, we are seeing an incredible spectrum of clinical severity and we are learning more about the natural history of LDS. In fact, in families with more than one member having the same gene mutation responsible for LDS, we see a variety of physical symptoms and vascular involvement. Although many children are diagnosed with LDS, there have been more adults in their 50s and older also first being diagnosed with LDS.Internationally, many different institutions are developing methods to improve management and care of individuals diagnosed with LDS. As well, as more medical professionals are becoming aware about the physical findings associated with LDS, we hope that diagnoses will be made earlier in order to improve medical outcome. It is expected that the outlook for individuals with LDS will continue to improve as more is learned about the disorder. We remain optimistic and enthusiastic about the development of effective therapies for Loeys-Dietz syndrome.
Because of the rarity and the newness of the disorder, there may be research opportunities available to help physicians and researchers learn more about the various complications. Stay tuned for more opportunities for participation to help expand our knowledge and understanding about LDS.