This may require a lifestyle adjustment that may be hard for a child to understand or accept. For both children and adults, appropriate medical care, accurate information, and social support are key to living with the disease. Genetic counseling may also be helpful in understanding the disease and its potential impact on future generations. While Marfan syndrome is a lifelong disorder, the outlook has improved in recent years. Early diagnosis and advances in medical technology have improved the quality of life for people with Marfan syndrome and lengthened their lifespan.
Advances being made by researchers provide hope for the future.
With early diagnosis and appropriate management, the life expectancy for someone with Marfan syndrome is similar to that of the average person. Scientists are approaching research on Marfan syndrome from a variety of perspectives. One approach is to better understand what happens once the genetic defect or mutation occurs. Scientists are searching for the answers to these questions both by studying the genes themselves and by studying large family groups affected by the disease. A newly developed mouse model that carries a mutation in the fibrillin gene may help scientists better understand the disease.