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MARFAN SYNDROME AWARENESS

by Carla Harris category: Health

“Approx 1 in 5000 people have Marfan Syndrome, undiagnosed it can be fatal. KNOW THE SIGNS AND SAVE A LIFE! http://thndr.me/YrAtWI

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Carla Harris
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Ends Feb 01, 9:00 PM AEDT

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This campaign ended on February 01 at 9PM

MARFAN SYNDROME AWARENESS

What is Marfan Syndrome?

Marfan Syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all of the body’s cells, organs and tissue together.

Who has Marfan Syndrome?

About 1 in 5,000 people have Marfan Syndrome, including men and women of all races and ethnic groups. About 3 out of 4 people with Marfan Syndrome inherit it, meaning they get the genetic mutation from a parent who has it. But some people with Marfan Syndrome are the first in their family to have it.

Knowing the signs of Marfan Syndrome can save lives

People with Marfan Syndrome are born with it, but features of the disorder are not always present right away. Some people have a lot of Marfan features at birth or as young children – including serious conditions like aortic enlargement. Others have fewer features when they are young and don’t develop aortic enlargement or other signs of Marfan Syndrome until they are adults. Some features of Marfan Syndrome, like those affecting the heart and blood vessels, bones or joints, can get worse over time.
This makes it very important for people with Marfan Syndrome and related disorders to receive accurate, early diagnosis and treatment. Without it, they can be at risk for potentially life-threatening complications.

Some signs are easy to see

Every person’s experience with Marfan Syndrome is slightly different. No one has every feature and people have different combinations of features. Some features of Marfan Syndrome are easier to see than others. These include:
  • Long arms, legs and fingers
  • Tall and thin body type
  • Curved spine
  • Chest sinks in or sticks out
  • Flexible joints
  • Flat feet
  • Crowded teeth
  • Stretch marks on the skin that are not related to weight gain or loss

Other signs are harder to detect

Harder-to-detect signs of Marfan Syndrome include heart problems, especially those related to the aorta, the large blood vessel that carries blood away from the heart to the rest of the body. Other signs can include sudden lung collapse and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts. Special tests are often needed to detect these features.

How is the body affected?

Heart and blood vessels (Cardiovascular system)-

  • Enlarged or bulging aorta, the main blood vessel that carries blood from the heart to the rest of the body (aortic dilation or aneurysm)
  • Separation of the layers of the aorta that can cause it to tear (aortic dissection)
  • “Floppy” mitral valve (mitral valve prolapse-MVP)

Bones and joints (skeletal system)-

  • Long arms and legs
  • Tall and thin body type
  • Long, thin fingers
  • Curvature of the spine (scoliosis or kyphosis)
  • Chest sinks in or sticks out
  • Flexible joints
  • Flat feet
  • High-arched palate
  • Teeth that are too crowded

Eyes (ocular system)-

  • Severe nearsightedness (myopia)
  • Dislocated lens of the eye
  • Detached retina
  • Early glaucoma
  • Early cataracts

Lungs-
  • Sudden lung collapse
  • Emphysema
  • Asthma
  • Sleep apnea

Other body systems-

  • Stretch marks on the skin that aren't explained by pregnancy or weight gain or loss
  • Swelling of the sac around the spinal column (dural ectasia, found with CT or MRI scans of the back)


What should you do if you think you might have Marfan Syndrome?

If you suspect that you or a family member may have Marfan Syndrome:
  • Find a doctor who is knowledgeable about genetic disorders
  • Compile a health history
  • Reach out for information and support
For more information visit The Marfan Foundation website:
http://www.marfan.org/ 

Organizer

Carla Harris

My 13 year old daughter has Marfan Syndrome. While it can be an extremely difficult condition to live with, we are grateful that at least we know. Undiagnosed it can be fatal and approximately half of the people with this condition don't know they have it. Please help us spread awareness around the world. Awareness saves lives- know the signs of Marfan Syndrome!

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