Marfan Syndrome Recommendations.

April 7th, 2022

I have Marfan syndrome and would like information from someone who specializes in diving and its associated risks. My cardiologist has recommended against diving, but people with Marfan syndrome usually have limited physical activity, so I was not surprised. I have been treated my whole life and maintain a very active lifestyle, including swimming, water polo, basketball, and marathon running, against all recommendations. What are the risks for someone with Marfan diving, and is there anything I can do to mitigate them?

Marfan syndrome has an extensive spectrum of presentation from mild to severe and requires your physician team’s assessment. Many factors may have influenced your cardiologist’s recommendation against diving despite the active physical activities that you describe.

Physicians will carefully separate the list of appropriate activities. Diving affects various body systems, so the extra stress on systems that Marfan syndrome affects is an important consideration.

The following are a few specific conditions to consider:

Dilation and dissection of the aorta: Fluid changes that occur while diving may stress the aorta.
Cardiac valvular conditions, cardiomyopathy, and dysrhythmias: These potential problems are often more significant if they occur underwater.
Pneumothorax: Marfan syndrome can have a higher association with pneumothorax. There can be a risk of spontaneous pneumothorax (collapsed lung) with little or no inciting event. Although problematic on land, it is life-threatening while diving. Pulmonary barotrauma can cause a collapse of anyone’s lung. Upon ascent, trapped air expands and may cause a collapsed lung to develop into a tension pneumothorax, a medical emergency in which air cannot escape the pleural space around the affected lung, increasing
the risk of a pulmonary overinflation syndrome such as arterial gas embolism.
Scoliosis: Spine curvature has been associated with Marfan syndrome. Depending on the severity, scoliosis may cause a reduced exercise tolerance, making routine dive activities such as carrying gear, climbing a boat ladder, or swimming against a current more difficult.
Spinal dura: There may be changes to the spine’s dura that can result in pain and headache. These changes may have a confounding impact on the diagnosis of spinal decompression illness (DCI).
Thermal regulation: Wearing thermal protection can delay the core temperature drop from immersion in water, but you will eventually cool, and self-regulation may be difficult. You should review temperature regulation with your physician.

Medications and your baseline wellness are also worth reviewing. Some medications may have adverse reactions that may be a contraindication to diving. Your daily wellness is a necessary consideration, as are any regularly occurring pain or deficits that may make diagnosing DCI difficult. It’s essential to have an open discussion with your treating physician and follow their recommendations.
— Robert Soncini, NR-P, DMT

© Alert Diver Magazine Q1 2022/ DAN.org