Marfan Syndrome - Experience

Not ready to share? Read other Patient Comments

Please describe your experience with marfan syndrome.

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black triangle:

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.

Return to Marfan Syndrome

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!