Managing Marfan Syndrome As You Age

About 1 in 5,000 Americans suffer from a genetic health condition called Marfan Syndrome, but there may be more cases in the Van Nuys area or elsewhere that haven’t been diagnosed.

Caregivers can also have an important role in looking for symptoms in people and encouraging them to see a provider or helping people who have already been diagnosed, which sometimes also can mean encouraging them to check with a medical expert.

The team at Accredited Home Care encourages more people in the community to learn more about this condition. It’s not something that you can catch if you don’t have it, but it is also something that can be passed on to generations.

Often, a parent with the condition has a 50 percent chance of each of their children acquiring it, but there have been reported cases where someone is diagnosed with it but doesn’t have a direct blood relative who has it, such as a parent or aunt or uncle. It may exist in more distant relatives but not everyone may be aware of some of these, especially in larger extended families that might be separated by geography or time.

However, seeing a qualified provider who knows about Marfan Syndrome is a great start. He or she may be able to provide a comprehensive exam and learn if it’s present and to what degree. If it is, then different treatment options can be discussed as well as smart precautions.

Learning more

This month provides a good opportunity for people to learn more about Marfan Syndrome. Along with being American Heart Month, February is also Marfan Awareness Month, an annual celebration and global awareness campaign coordinated by the Marfan Foundation.

The foundation uses the exposure to encourage people around the country to learn more about the condition shared by about 500,000 Americans. This can include finding a provider if you aren’t sure about the condition by may have some of the symptoms.

Or if you know if it exists in your family line, the activities of the month might be a good motivation to explore further.

The Marfan Foundation plans a strong social media campaign throughout the month that people can be part of. They also get involved in and volunteer to be part of local awareness events such as health fairs, or plan them if there isn’t anything specifically scheduled or organized.

To encourage participation and awareness, the foundation is selling “IKnowMarfan” T-shirts. These can be ordered online in February but not sent until March, so wouldn’t be available for this year’s activities. But having one can be a good reminder to friends, family, and the community and maybe even spark useful conversations of support.

Support can be also shown by members of the medical community, such as home health care professionals. A nurse or therapist with experience treating patients could proudly display the T-shirt and invite family members to learn more.

Defining Marfan Syndrome

A big part of Marfan Syndrome awareness is simply education about what it is and what it means.

According to WebMD, Marfan Syndrome is a genetic disorder where the connective tissue doesn’t grow how it’s supposed to in different parts of the body. This could influence overall strength  or elasticity especially where

For instance, people with the condition may have longer than average legs, arms, and fingers. They could be taller than average and have eye problems such as increased pressure or extreme nearsightedness. The syndrome can contribute to skeletal changes, such as a long spine that may begin to curve, crowded teeth in the jaw or breastbone that is more prominent or depressed.

Medical professionals say that the largest concern facing people is possible damage to the heart.

The Mayo Clinic said that the body growing in unexpected directions could cause damage to the aorta, which is the artery that feeds the heart or hurt pieces of the heart organ itself. It is also known to cause heart murmurs. All of these situations are considered dangerous, even life-threatening, no matter someone’s age.

Aging needs

Hopefully, a provider should already be aware that someone is suffering from Marfan Syndrome before it gets to the dangerous point where heart damage may be taking place.

It’s a condition that sometimes may not show up until at least adolescence or symptoms may slowly progress over someone’s lifetime or show up occasionally.

For instance, the Marfan Foundation said cataracts are increasingly common as people age but may start to show up slightly earlier (in the 40s instead of the 50s.)

There are also a variety of optical conditions that may affect people with Marfan Syndrome, including glaucoma, lens dislocation, and cataracts.

Skeletal and joint problems are possible, including some that may not show up until later in life. One is called dural ectasia which is swelling of the spinal cord sac. It becomes more and more common over age 36.

Consulting a provider is a smart idea since he or she can provide advice on treatment options, such as medication, any sort of braces, or even surgery, plus suggestions on how to detect heart changes.