Learning your child has progeria can be emotionally devastating. Suddenly you know that your child is facing numerous, difficult challenges and a shortened life span. For you and your family, coping with the disorder involves a major commitment of physical, emotional and financial resources.
In dealing with a disorder such as progeria, support groups can be a valuable part of a wider network of social support that includes health care professionals, family and friends. In a support group, you'll be with people who are facing challenges similar to the one that you are. Talking to group members can help you cope with your own feelings about your child's condition. If a group isn't for you, talking to a therapist or clergy member may be beneficial.
Ask your doctor about self-help groups or therapists in your community. Your local health department, public library, telephone book and the Internet also may be good sources for finding a support group in your area. Because progeria is so rare, you may not be able to find a progeria-specific support group, but you may be able to find a group for parents of children with chronic illness. The Progeria Research Foundation may be able to help you connect with other families coping with progeria. The Foundation can be reached at 978-535-2594.
Helping your child cope
If your child has progeria, he or she is also likely to experience fear and grief as awareness grows that progeria shortens life span. Your child eventually will need your help coping with the concept of death, and may have a number of difficult but important questions about spirituality and religion. Your child may also ask questions about what will happen in your family after he or she dies.
It's critical that you are able to talk openly and honestly with your child, and offer reassurance that's compatible with your belief system. Ask your doctor, therapist or clergy member to help you prepare for such conversations with your child. Friends who you meet through support groups also may be able to offer valuable guidance.
Your child might also benefit from talking to a therapist or clergy member.
Apr. 23, 2011
- Learning about progeria. National Genome Research Institute. http://www.genome.gov/pfv.cfm?pageID=11007255. Accessed March 4, 2011.
- Progeria (Hutchinson-Gilford syndrome). The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/sec19/ch286/ch286d.html. Accessed March 4, 2011.
- Brown TW. Hutchinson-Gilford progeria syndrome. In: Pagon RA, et al., eds. GeneReviews. Seattle, Wash.: University of Washington; 1993. http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hgps. Accessed March 4, 2011.
- Meredith MA, et al. Phenotype and course of Hutchinson-Gilford progeria syndrome. New England Journal of Medicine. 2008;358:592.
- Kieran MW, et al. New approaches to progeria. Pediatrics. 2007;120:834.
- Martini R. Helping children cope with chronic illness. American Academy of Child and Adolescent Psychiatry. http://www.aacap.org/cs/root/developmentor/helping_children_cope_with_chronic_illness. Accessed March 4, 2011.
- Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. March 6, 2011.