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 (CaringBridge)

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)

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.

The Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the Canadian Chapter of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the CCNNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.