Self-management

Lifestyle and home remedies

Here are some steps you can take at home to help your child:

  • Make sure your child stays well-hydrated. Dehydration can be more serious in children with progeria. Be sure your child drinks plenty of water, especially during an illness, with activity or in hot weather.
  • Provide frequent, small meals. Because nutrition and growth can be an issue for children with progeria, giving your child smaller meals more often may help increase calorie intake. Add healthy, high-calorie foods and snacks or supplements as needed.
  • Provide opportunities for regular physical activity. Check with your child's doctor to learn which activities are appropriate for your child.
  • Get cushioned shoes or shoe inserts for your child. The loss of body fat in the feet can cause discomfort.
  • Use sunscreen. Use a broad-spectrum sunscreen with an SPF of at least 15. Apply sunscreen generously, and reapply every two hours — or more often if your child is swimming or perspiring.
  • Make sure your child is up to date on childhood immunizations. A child with progeria isn't at increased risk of infection, but like all children, is at risk if exposed to infectious diseases.
  • Provide learning and social opportunities. Progeria won't affect your child's intellect, so he or she can attend school at an age-appropriate level. Some adaptations for size and ability may be needed.
  • Make adaptations. You may need to make some changes at home that enable your child to have some independence and to be comfortable. These can include household changes so that your child can reach items such as faucets or light switches, clothes with special closures or in special sizes, and extra padding for chairs and beds.

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.
April 27, 2017
References
  1. National Library of Medicine. Hutchinson-Gilford progeria syndrome. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/hutchinson-gilford-progeria-syndrome. Accessed Feb. 1, 2017.
  2. Learning about progeria. National Human Genome Research Institute. https://www.genome.gov/11007255/learning-about-progeria/. Accessed Feb. 1, 2017.
  3. Hutchinson-Gilford progeria. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/hutchinson-gilford-progeria/. Accessed Feb. 1, 2017.
  4. Progeria (Hutchinson-Gilford syndrome). Merck Manual Professional Version. http://www.merckmanuals.com/professional/pediatrics/miscellaneous-disorders-in-infants-and-children/progeria. Accessed Feb. 1, 2017.
  5. Progeria. National Institutes of Health. https://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=59. Accessed Feb. 1, 2017.
  6. Chronic illness and children. American Academy of Child and Adolescent Psychiatry. https://www.aacap.org/AACAP/Families_and_Youth/Facts_for_Families/FFF-Guide/The-Child-With-A-Long-Term-Illness-019.aspx. Accessed Feb. 1, 2017.
  7. Swahari V, et al. Speeding up the clock: The past, present and future of progeria. Development, Growth and Differentiation. 2016;58:116.
  8. The progeria handbook: A guide for families and health care providers of children with progeria. Progeria Research Foundation. http://www.progeriaresearch.org/patient_care.html. Accessed Feb. 1, 2017.
  9. Johnson JN (expert opinion). Mayo Clinic, Rochester, Minn. March 6, 2017.