Coping and support

Learning that your child has progeria can be emotionally devastating. Suddenly you know that your child is facing many 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.

Some helpful resources include:

• Support network. Your health care team, family and friends can all be a valuable part of your support network. Also, ask your doctor about self-help groups or therapists in your community. Your local health department, public library and trustworthy sources on the internet may be helpful in finding resources.
• Support groups. In a support group, you'll be with people who are facing challenges similar to yours. If you can't find a progeria support group, you may be able to find a group for parents of children with chronic illness.
• Other families dealing with progeria. The Progeria Research Foundation may be able to help you connect with other families coping with progeria.
• Therapists. If a group isn't for you, talking to a therapist or clergy member may be beneficial.

Helping your child cope

If your child has progeria, he or she is also likely to increasingly feel different from others as the condition progresses. Over time, fear and grief will likely increase as awareness grows that progeria shortens life span. Your child will need your help coping with physical changes, special accommodations, other people's reactions and eventually the concept of death.

Your child may have difficult but important questions about his or her condition, spirituality and religion. Your child may also ask questions about what will happen in your family after he or she dies. Siblings may have these same questions.

For such conversations with your child:

• Ask your doctor, therapist or clergy member to help you prepare.
• Consider input or guidance from friends you meet through support groups who've shared this experience.
• Talk openly and honestly with your child and his or her siblings, and offer reassurance that's compatible with your belief system and appropriate to the child's age.
• Recognize when your child or his or her siblings might benefit from talking to a therapist or clergy member.