LDS manifests itself in a number of ways, therefore no two persons with LDS will have identical medical characteristics. It is recommended that you consult with your physician or a local geneticist if you have questions about individual health concerns.
- Pressure on the aorta (the largest artery leaving the heart) can be controlled by the administration of medications known as beta-blockers that work to lessen the strain on the body’s major arteries by reducing heart rate and blood pressure.
- Continued monitoring of the aorta (largest artery leaving the heart) and other arteries through annual echocardiograms, CTs or MRIs with contrast of the head, neck, chest, abdomen and pelvis are recommended to detect and monitor aneurysm formation and/or dissections (tears). The frequency of these scans depend on aneurysm size and rate of growth, so it is recommended that individuals consult their doctor on the appropriate intervals for imaging.
- X-rays of the cervical spine in the flexion and extension positions is recommended to assess for vertebral anomalies and/or instability. If there are any anomalies detected, consultation with an orthopedist is recommended. Rarely, surgery for cervical spine fusion is required. It is important to assess for cervical spine instability prior to undergoing any surgery, as this may impact intubation procedures.
- Vascular surgery is a widely recommended treatment option as a preventative surgery for individuals with a rapidly enlarging aorta (the largest artery leaving the heart) or artery, or a pronounced family history of arterial dissection. Aortic root replacement is the most common vascular surgery occurring in individuals with LDS and is highly successful.
- Exercise restrictions are typically put in place to assist in slowing the rate of aortic and arterial aneurysm growth. It is advised that individuals with LDS avoid competitive sports, especially contact ones, and other exercises or muscle straining activities performed to the point of exhaustion. Individuals can and should remain active with aerobic types of activities that are performed in moderation. Exercises such as push-ups, chin-ups, sit-ups, where you have to strain your muscles are to be avoided. Acivities such as hiking, biking, jogging and swimming that help to naturally lower the heart rate and blood pressure should be a part of an individual's cardiovascular activity. A good recommendation for cardiovascular activities is to exercise only to a level where you can hold a conversation while performing the activity.
- Individuals with LDS may need orthopedic surgery or other interventions such as bracing for scoliosis, orthotics/surgeries for foot deformities, harnesses for congenital hip dislocation. Typically, surgery for pectus anomalies is pursued for cosmetic purposes and not out of medical necessity.
It is always important to consult your doctor to determine effective and personalized course of action.
Back to MEDICAL INFORMATION.