Skip to main content
Accessibility  |  Contact  |  Privacy  |  Terms of Service

Unexplained Childhood Disorders

  • Published: 2010-10-14 : Author: Mary Ann Liebert, Inc./Genetic Engineering News
  • Synopsis: Parents of children with undiagnosed learning disorders developmental deficits and congenital abnormalities face psychological and social challenges.

Main Document

How parents cope with daily challenges and an uncertain future.

Parents of children with undiagnosed learning disorders, developmental deficits, and congenital abnormalities face a host of psychological and social challenges, which are explored in detail in a reflective article in Genetic Testing and Molecular Biomarkers, a peer-reviewed journal published by Mary Ann Liebert, Inc. (

An interview-based study of parents of children with undiagnosed disorders describes the parental experience as a "journey" comprised of an inner, emotional journey and an outer-world, sociological experience. Celine Lewis, from Genetic Alliance UK (London) and Heather Skirton and Ray Jones, from the University of Plymouth (UK), identify the primary components of this multifaceted journey in the article entitled "Living Without a Diagnosis: The Parental Experience." A commonly expressed theme among the study participants was the sense of frustration that is present throughout their experiences.

Many of the experiences described during the interviews are similar to those expressed by parents of children with known disabilities. These include the initial recognition and acceptance of the disorder and the process of pursuing a diagnosis, which are components of the inner journey. Additionally, shared social or outer-world experiences might include the interaction with members of the child's healthcare team and dealing with issues such as education and housing. The questioning and uncertainty associated with undiagnosed disorders in children adds another layer of complexity to the challenges these parents face, conclude the authors of the study.

"The article is a vivid illustration of the impact of a genetic disease, the benefit of a diagnosis, and the ongoing challenge of care to the patient and family after the diagnosis," says Kenneth I. Berns, MD, PhD, Editor-in-Chief of Genetic Testing and Molecular Biomarkers, and Director of the University of Florida's Genetics Institute, College of Medicine, Gainesville, FL.

Genetic Testing and Molecular Biomarkers is an authoritative peer-reviewed journal published bimonthly in print and online that reports on all aspects of genetic testing, including molecular and biochemical based tests and varied clinical situations; ethical, legal, social, and economic aspects of genetic testing; and issues concerning effective genetic counseling. Tables of content and a free sample issue may be viewed online at

Mary Ann Liebert, Inc. ( is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including Human Gene Therapy and OMICS. Its biotechnology trade magazine, Genetic Engineering & Biotechnology News (GEN), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's 60 journals, books, and news-magazines is available at

Similar Topics

1 : Siblings of Cot Death Victims Have Four Times SIDS Risk : European Society of Cardiology.
2 : Increased Risk for Abuse for Children with Specific Birth Defects : University of Texas Health Science Center at Houston.
3 : Childhood Trauma: Symptoms & Behavior Information : Disabled World.
4 : CHOPS Syndrome: New Early Development Genetic Syndrome : The Children's Hospital of Philadelphia.
5 : Baby Formula - Higher Arsenic Risk than Breast Milk : Dartmouth College.
From our Pediatrics section - Full List (93 Items)

Submit disability news, coming events, as well as assistive technology product news and reviews.

Loan Information for low income singles, families, seniors and disabled. Includes home, vehicle and personal loans.

Famous People with Disabilities - Well known people with disabilities and conditions who contributed to society.

List of awareness ribbon colors and their meaning. Also see our calendar of awareness dates.

Blood Pressure Chart - What should your blood pressure be, and information on blood group types/compatibility.

1 : vEAR: Why Can I Sometimes 'Hear' Silent Flashes When Viewing Animated Gif's?
2 : New Jersey Digital Art Program for Individuals with ASD
3 : 2018 Lime Connect Fellowship Program for Students with Disabilities
4 : Epihunter Classroom - Making Silent Epileptic Seizures Visible
5 : Prostate MRI Reveals More Treatable Cancers and Reduces Overdiagnosis


Disclaimer: This site does not employ and is not overseen by medical professionals. Content on Disabled World is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. See our Terms of Service for more information.

Reporting Errors: Disabled World is an independent website, your assistance in reporting outdated or inaccurate information is appreciated. If you find an error please let us know.