Living with Marfan syndrome often requires a great deal of adjustment in outlook and lifestyle. For children and adults alike, having appropriate medical care, accurate information, and social support are key parts of coping with Marfan syndrome.
Living with Marfan syndrome can cause social, emotional, and financial stress. It often requires a great deal of adjustment in outlook and lifestyle. Adults with Marfan syndrome may feel angry or afraid. They may also have concerns about passing Marfan syndrome on to future generations or about the physical, emotional, and financial implications of this disease.
Parents and siblings of children diagnosed with Marfan syndrome may feel sadness, anger, and guilt. It is important for parents to know that they did not cause the fibrillin-1 gene to mutate. Parents may be concerned about the genetic implications for siblings or have questions about the risk to future children. Some children with Marfan syndrome are advised to restrict their activities. 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 Marfan syndrome. Genetic counseling may also be helpful in understanding the disease and its potential impact on future generations.
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