Adult Genetic Counseling in Practice

Genetic Condition: Marfan Syndrome

Historical Figure: President Abraham Lincoln (1809 – 1865)

 

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Abraham Lincoln’s unusually tall 6’4” stature, and thin features attracted attention both during his life, and following his assassination. Several historians have proposed theories about medical conditions that President Lincoln may have had. In 1962, Dr. Abraham Gordon suggested that Abraham Lincoln had a genetic condition known as Marfan syndrome. To this day, no genetic testing has been done on Lincoln’s DNA to confirm or deny this theory. 

 

What would have happened if Abraham Lincoln lived today?

President Abraham Lincoln is referred to a genetic counselor because his family doctor thinks he has Marfan syndrome.

What will the Genetic Counselor do?

  • Take a detailed family and medical history about health problems and features in President Lincoln and his family (cousins, aunts, uncles, grandparents), focusing on features that are common in Marfan syndrome, such as being tall and thin.
  • Speak with the geneticist that will do a physical exam looking for physical features of Marfan syndrome in President Lincoln.
  • Explain the genetics and inheritance of Marfan syndrome.
  • Research the genetic testing available for President Lincoln to test the genes we know cause Marfan syndrome.
  • Educate President Lincoln about genetic testing, including what he will learn from taking the test, and the pros and cons of taking the test (medical and social).
  • Wait for the test results to come back (this can take weeks to months).

 

President Lincoln’s genetic testing finds a gene change that diagnoses him with Marfan syndrome.

What does the Genetic Counselor do now?

  • Tell President Lincoln what his test results are and what they mean.
  • Teach him about how Marfan syndrome is passed down in families and who else in his family is at risk.
  • Tell him what medical problems he might, and how they are treated.
  • Tell him about the different doctor specialists that he should see.
  • Give advice on how to tell his family members about his diagnosis.
  • Provide emotional support.

 

How could a genetic counselor have helped President Lincoln if he were living today?

  • A person with Marfan syndrome is at risk for heart problems that can cause sudden death. By going to see a Genetic Counselor and learning he has Marfan syndrome, President Lincoln could help prevent some of the dangerous heart complications through specialty medical care and surgery.
  • A person with Marfan syndrome is also at risk of vision complications. After seeing a genetic counselor and being diagnosed with Marfan syndrome, President Lincoln can go to an eye specialist trained to treat these vision problems.