Marfan Syndrome Awareness for Educators (A Guest Post)

When I learned that February is Marfan Awareness Month, I invited my friend Maya to contribute a guest post to my blog. I am so grateful she accepted! As we chatted about what to discuss, our conversation went in the direction of signs that teachers (and parents or anyone who works regularly with children) should look for that may indicate a child should be further evaluated for Marfan Syndrome.

marfan monthMaya says:

I’d like to thank Paula for the opportunity to share with all of you some information about a cause close to my heart: Marfan syndrome. Both my youngest son and I have Marfan. It’s a potentially life-threatening connective tissue disorder that can affect much of the body, including the heart and aorta (the main blood vessel running from the heart), the eyes, the lungs, the skeleton, and skin. People with Marfan are at risk for rupturing the aorta, which can be fatal and is why early diagnosis is so important. Prompt diagnosis and monitoring leads to greater chances for preventative surgery and an average life expectancy. Today, in honor of Marfan Awareness Month, I’d like to share with you some signs you could see in the classroom that indicate a child may need to be evaluated for Marfan syndrome or a related disorder.

maya

Maya

Skeletal clues: People with Marfan tend to be taller than their unaffected family members, and thin. They have disproportionately long features as well: long legs, arms, face, fingers and toes. They may also have flat feet, scoliosis or kyphosis (forward rounding of the upper back), and unusual stretch marks.

Poor handwriting: People with Marfan syndrome are double-jointed (hypermobile) and often have poor fine motor control. This can result in a unique pencil grip, difficulty cutting with scissors, and illegible handwriting due to poor grip on the pencil or the hand tiring easily.

Difficulty reading the board: About 50% of people with Marfan syndrome experience dislocation of the lenses in their eyes. This makes them near-sighted. Near-sightedness can also occur without lens dislocation. Children with vision issues may also appear to have difficulty sitting still or concentrating.

Delayed gross motor skills: Children with Marfan can appear to be very uncoordinated, due to gross motor delays and hypermobility. This is actually what got me diagnosed, when I was 8 years old. My mother noticed that I could not skip, ride a bike, and that I tired out much more easily than other kids my age.

Obviously any one of these could appear in the general population; it’s when they begin to appear together that they may be of concern. If you suspect Marfan syndrome in someone you know (or yourself!), resources are available. School nurses, the National Marfan Foundation has information for you (click on this link for more info). The foundation also has resources for parents, patients, and medical professionals at www.marfan.org, including a clinic list and information on what tests are needed for a diagnosis.

Remember: Early diagnosis is vital!