Marfan Syndrome - Experience

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What is Marfan syndrome?

Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin, and lungs. Marfan syndrome affects men, women, and children, and has been found among people of all races and ethnic backgrounds.

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See what others are saying

Comment from: MrOK, (Caregiver) Published: March 25

My son recently passed away due to a heart aneurism; he was to soon be 18. The medical examiner stated he died in seconds, there was no chance. He had detached retina, long fingers, caved in chest and other symptoms that relate to Marfan syndrome. I'm not sure if any proactive measures could have been taken, but for families who see these symptoms, please be as proactive as possible and seek medical attention. If an aorta replacement could have been done to save my son's life, he'd still be with us today. It's a very sad way to lose a young life, one who was extremely smart, bright and truly sincere.

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Comment from: curlybill, 55-64 Male (Patient) Published: April 16

I needed abdominal surgery in 2012, I had it done arthroscopic at which time they inflated my abdominal cavity with air. It seems my connective tissue let the air travel between my fat layer and muscle on my whole torso up to my shoulders and remained inflated for about a week. I somewhat remember (because I was on pain medications) the doctor pressing on the inflated area and it sounded like popcorn popping as the air was migrating through the connective tissue. The doctor indicated this was unusual. That was when I was diagnosed with Marfan syndrome. I turned 60 in the hospital. I am now 63 and have had 2 emergency surgeries in the last 3 months for internal hernia, and small bowel obstruction. Luckily there was not a strangulation of the bowels and I didn't need resection. Life is an adventure.

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