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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. And difficulty with handwriting, a fine-motor skill, can be remedied by allowing students to use laptop computers in the classroom or by giving them more time on handwritten assignments.
For most young people, though, 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; and 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/default.asp. Accessed June 1, 2010.
- Wright MJ. The Marfan syndrome. http://www.uptodate.com/home/index.html. Accessed June 1, 2010.
- Hiratzka LF, et al. 2010 ACCF/AHA/AATS/ACR/ASA/SCA/SCAI/SIR/STS/SVM guidelines for the diagnosis and management of patients with thoracic aortic disease: Executive summary. Journal of the American College of Cardiology. 2010;55:e27. Accessed June 1, 2010.
- Keane MG, et al. Medical Management of Marfan Syndrome. Circulation. 2008;117:2802.
- Pyeritz RE. Marfan syndrome: 30 years of research equals 30 years of additional life expectancy. Heart. 2009;95:173.
- Children and teens. National Marfan Foundation. http://www.marfan.org/marfan/2493/Children-and-Teens. Accessed June 1, 2010.
- Glaucoma: What you should know. National Eye Institute. http://www.nei.nih.gov/health/glaucoma/glaucoma_facts.asp. Accessed June 1, 2010.
- Facts about retinal detachment. National Eye Institute. http://www.nei.nih.gov/health/retinaldetach/retinaldetach.asp. Accessed June 1, 2010.
- Grogan M (expert opinion). Mayo Clinic, Rochester, Minn. June 4, 2010.
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