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.
May 03, 2014
- Dorland's Illustrated Medical Dictionary. 32nd ed. Philadelphia, Pa.: W.B. Saunders; 2011. http://dorlands.com/index.jsp. Accessed Jan. 29, 2014.
- Learning about progeria. National Human Genome Research Institute. http://www.genome.gov/11007255. Accessed Jan. 29, 2014.
- Progeria (Hutchinson-Gilford syndrome). The Merck Manuals: The Merck Manual for Health Care Professionals. http://www.merckmanuals.com/professional/pediatrics/miscellaneous_disorders_in_infants_and_children/progeria.html. Accessed Jan. 29, 2014.
- Disorders of accelerated aging. The Merck Manuals: The Merck Manual for Patients and Caregivers. http://www.merckmanuals.com/home/older_peoples_health_issues/the_aging_body/disorders_of_accelerated_aging.html. Accessed Jan. 29, 2014.
- When your child is diagnosed with chronic illness: How to cope. American Psychological Association. https://www.apa.org/helpcenter/chronic-illness-child.aspx. Accessed Jan. 29, 2014.
- Coping with chronic illness. American Academy of Pediatrics. http://www.healthychildren.org/English/health-issues/conditions/chronic/pages/Coping-With-Chronic-Illness.aspx. Accessed Jan. 29, 2014.
- Progeria. National Institutes of Health. http://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=59&key=P#P. Accessed Jan. 29, 2014.
- Gordon LB, et al. Hutchinson-Gilford progeria syndrome. GeneReviews (Internet). http://www.ncbi.nlm.nih.gov/books/NBK1121/. Accessed Jan. 29, 2014.
- Coppede F. Premature aging syndrome. Advances in Experimental Medicine and Biology. 2012;724:317.
- Kirmani S (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 19, 2014.
- Johnson JN (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 23, 2014.
You Are ... The Campaign for Mayo Clinic
Mayo Clinic is a not-for-profit organization. Make a difference today.