What is included in patient education about Kennedy disease (KD)?

Updated: Sep 30, 2019
  • Author: Paul E Barkhaus, MD, FAAN, FAANEM; Chief Editor: Nicholas Lorenzo, MD, MHA, CPE  more...
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Answer

See the list below:

  • The treating physician must have an ongoing dialogue with the patient to keep him or her informed about the status of the disease.

  • Although patient issues should be addressed as needed, the physician must be proactive and anticipate issues such as potential difficulties with driving and other activities of daily living.

  • The treating physician should maintain a balance between the reality of the patient's disease process and a sense of hope and the patient's ability to cope with the disease.

  • National Organization for Rare Disorders: This association addresses some uncommon or orphan neurologic disorders for which no dedicated organization exists.


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