Self-management

Coping and support

It's quite possible for your daughter to lead a full and happy life. However, sometimes help and support is needed. Both you and your daughter may benefit from these strategies:

  • Connect with others. Support groups provide help and support for people with X and Y chromosome disorders and their families. They offer information and advice on coping, as well as ways to meet and talk with others in similar situations. Ask your daughter's doctor or therapist if there is a local support group for similar types of disorders. You can also contact AXYS — association for X and Y chromosome variations.
  • Look for disability support resources. Coping with a learning disability is challenging. Get information on available services and sources of support. One example is the National Center for Learning Disabilities. Ask your daughter's school or therapist for information on additional resources.
  • Find ways to relieve stress. It's natural to feel overwhelmed at times. Talk about your concerns with a trusted friend or family member to help relieve your stress. Take some time for yourself doing something you like to do. Seek the help of outside caregivers who can give you a break from time to time.
Dec. 03, 2015
References
  1. Triple X syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/triple-x-syndrome. Accessed Sept. 11, 2015.
  2. Trisomy X. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/trisomy-x/. Accessed Sept. 11, 2015.
  3. Triple X syndrome. Merck Manual Consumer Version. http://www.merckmanuals.com/home/children-s-health-issues/chromosomal-and-genetic-abnormalities/triple-x-syndrome. Accessed Sept. 11, 2015.
  4. Van Rijn S, et al. The social behavioral phenotype in boys and girls with an extra X chromosome (Klinefelter syndrome and trisomy X): A comparison with autism spectrum disorder. Journal of Autism and Developmental Disorders. 2014;44:310.
  5. Otter M, et al. Triple X syndrome: A review of the literature. European Journal of Human Genetics. 2010;18:265.
  6. Van Rijn S, et al. Executive dysfunction and the relation with behavioral problems in children with 47,XXY and 47,XXX. Genes, Brain and Behavior. 2015;14:200.
  7. Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. Sept. 25, 2015.
  8. Pichurin PN (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 20, 2015.