Coping With

Niemann-Pick Disease

Dealing with a new diagnosis of Niemann-Pick Disease

Care for the Care Giver

Sibling Reactions

Grief Support

Teens in Transition

Communicating with Friends and Family

(the NNPDF/CaringBridge Partnership)

There may be times during the course of a chronic illness like Niemann-Pick disease when parents find their coping skills stretched to the limit.  Parents’ responsibilities to other children, to their own parents, and to each other may take a back seat to the needs of a family member who has a serious, debilitating illness, creating stress and feelings of inadequacy.  These are normal reactions but can become uncontrolled or pathological if not managed or relieved.  At times, the support of spouse, relatives, or friends can aid in the relief of these stresses.  At other times, professional assistance may be needed.  This web page will present stage-specific approaches to dealing with the stress and disruption of a chronic illness in a family member.  Topics will be presented by referencing one type of NPD; however, the strategies will likely be useful for all types of NPD.  For example, approaches to dealing with a new diagnosis of NPC can be applied to a new diagnosis of NPA and NPB. 

If there is a topic of particular interest to you that we have not addressed, don’t hesitate to contact NNPDF to request that it be the subject of a future posting.

Other Resources (Links)

http://www.parenting-ed.org/handout3/Specific%20Concerns%20and%20Problems/coping%20with%20chronic%20illness.htm

http://www.cincinnatichildrens.org/about/patient/coping/

http://www.nlm.nih.gov/medlineplus/copingwithchronicillness.html

http://www.childrenshospital.org/az/Site2184/mainpageS2184P0.html

http://www.athealth.com/consumer/Newsletter/FPN_4_5.html

Books:

• Young People and Chronic Illness by Kelly Huegel , Elizabeth Verdick. Free Spirit Pub. July 1, 1998. ISBN-10: 1575420414. ISBN-13: 978-1575420417

• The Resilient Family: Living with Your Child’s Illness or Disability by Paul W. Power, Arthur E. Dell, PhD. Sorin Books, September 2003, ISBN-10 1893732667. ISBN-13 978-1893732667.

• Easy for You to Say: Q and As for Teens Living with Chronic Illness or Disabilities by Miriam Kaufman. Firefly Books, revised edition, August 6, 2005. ISBN-10 1554070783. ISBN-13 978-1554070787.

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