Care in Chronic Fatal Genetic Disease

  • Aubrey Milunsky


Robert Louis Stevenson, who had pulmonary tuberculosis at the time, wrote that life is not a matter of holding good cards but of playing a poor hand well. Perhaps that was a typical perspective of someone with chronic illness, albeit nongenetic. The treatment of the fatally ill child calls for special perspectives and insights into normal child development. A clear perception of expected and achieved milestones of development is critical to care, whether it be provided by the nurse, physician, or any other health personnel. It is important to recognize, for example, the stage at which a child becomes aware of death and how he/she thinks of death.


Cystic Fibrosis Prenatal Diagnosis Pulmonary Tuberculosis Autosomal Recessive Disease Competent Physician 
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Copyright information

© Aubrey Milunsky 1981

Authors and Affiliations

  • Aubrey Milunsky
    • 1
    • 2
    • 3
  1. 1.Genetics DivisionEunice Kennedy Shriver CenterBostonUSA
  2. 2.Harvard Medical SchoolBostonUSA
  3. 3.Massachusetts General HospitalBostonUSA

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