Marfan Syndrome: Why Longitudinal Care Saves Lives

Aortic health is a moving target. Consistent imaging, medications, and a single timeline help people with Marfan stay ahead of risk.

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Quick Summary

Marfan syndrome affects connective tissue and increases risk for aortic enlargement and dissection. A longitudinal record with imaging, medications, and symptoms makes surveillance and decisions simpler for patients and clinicians.

What is Marfan syndrome

Marfan syndrome is an inherited connective tissue condition that can affect the heart, blood vessels, eyes, and skeleton. The biggest concern is aortic enlargement and dissection, which require regular monitoring and preventive care. See the Marfan Foundation and NIAMS.

Why a longitudinal view helps

  • Track aortic size over time with echo or MRI measurements in one place
  • Medications and blood pressure: record beta blockers or ARBs and daily readings
  • Eye and skeletal history: lens issues, scoliosis, or prior surgeries matter for planning
  • Family screening and genetics: store results and share them easily when needed

How Aether supports Marfan care

  • Centralizes imaging reports with key aortic dimensions and Z scores
  • Graphs aortic measurements across time for pattern spotting
  • Keeps medications, vitals, and symptoms together with appointments
  • Secure sharing links for cardiology or cardiothoracic consultations

Related reading

Helpful resources