Marfan Syndrome (cont.)
What are some of the emotional
and psychological effects of Marfan syndrome?
Being diagnosed and learning to live with a genetic disorder
can cause
social, emotional, and financial stress. It often requires a
great deal of
adjustment in outlook and lifestyle. A person who is an adult
when Marfan
syndrome is diagnosed may feel angry or afraid. There may also
be concerns
about passing the disorder to future generations or about its
physical,
emotional, and financial implications.
The parents and siblings of a child diagnosed with Marfan syndrome may
feel sadness, anger, and guilt. It is important for parents to know that
nothing that they did caused the fibrillin 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 the disease. Genetic counseling may
also be helpful in understanding the disease and its potential impact on future
generations.
What is the outlook for a person with Marfan syndrome?
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 life span. In addition, early identification
of risk
factors (such as aortic dilation) allows doctors to intervene
and prevent
or delay complications. 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.
Next: What research is being conducted to help people with Marfan syndrome? »
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