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Coping and support
By Mayo Clinic staffLiving with a genetic disorder can be extremely difficult for both adults and children. Adults who receive a diagnosis later in life may wonder how the disease will affect their careers, their relationships and their sense of themselves. And they may worry about passing the defective gene to their children.
But Marfan syndrome can be even harder on young people, especially because the often-inherent self-consciousness of childhood and adolescence may be exacerbated by the disease's effect on appearance, academic performance and motor skills.
Providing emotional, practical support
Working together, parents, teachers and medical professionals can provide children with both emotional support and practical solutions for some of the more distressing aspects of the disease. For example, children with Marfan syndrome may struggle in school because of eye problems that can be corrected with glasses or contact lenses.
For most young people, cosmetic concerns are at least as important as academic ones. Parents can help by anticipating these concerns and offering solutions:
- Contact lenses instead of glasses
- A brace for scoliosis
- Dental work for crowded teeth
- Clothes that flatter a tall, thin frame
In the long run, accurate information about the disease, good medical care and strong social support can help both children and adults cope with Marfan syndrome.
- Questions and answers about Marfan syndrome. National Institute of Arthritis and Musculoskeletal and Skin Diseases. http://www.niams.nih.gov/health_info/marfan_syndrome. Accessed Nov. 27, 2012.
- Wright MJ, et al. Genetics, clinical features and diagnosis of Marfan syndrome and related disorders. http://www.uptodate.com/index. Accessed Nov. 27, 2012.
- Kliegman RM, et al. Nelson Textbook of Pediatrics. 19th ed. Philadelphia, Pa.: Saunders Elsevier; 2011. http://www.mdconsult.com/das/book/body/208746819-6/0/1608/0.html. Accessed Nov. 27, 2012.
- Goldman L, et al. Cecil Medicine. 24th ed. Philadelphia, Pa.: Saunders Elsevier; 2012. http://www.mdconsult.com/das/book/body/191371208-2/0/1492/0.html#. Accessed Nov. 27, 2012.
- Wright MJ, et al. Management of Marfan syndrome and related disorders. http://www.uptodate.com/index. Accessed Nov. 27, 2012.
- AskMayoExpert. Marfan syndrome. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2012.
- Ferri FF. Ferri's Clinical Advisor 2013: 5 Books in 1. Philadelphia, Pa.: Mosby Elsevier; 2012. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-0-323-08373-7..00002-9&isbn=978-0-323-08373-7&about=true&uniqId=343863096-23. Accessed Nov. 27, 2012.
- Bowen JM (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 7, 2013.
- Wright MJ, et al. Pregnancy and Marfan syndrome. http://www.uptodate.com/index. Accessed Nov. 29, 2012.
- Fuster V, ed. et al. Hurst's The Heart. 13th ed. New York, N.Y.: The McGraw-Hill Companies; 2011. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=5. Accessed Nov. 29, 2012.
- Goldsmith LA, et al., eds. Fitzpatrick's Dermatology in General Medicine. 8th ed. New York, N.Y.: The McGraw-Hill Companies; 2012. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=740. Accessed Nov. 29, 2012.
- Living with Marfan syndrome: Children and teens. National Marfan Foundation. http://www.marfan.org/marfan/2493/Children-and-Teens. Accessed Nov. 29, 2012.
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