Wolf-Hirschhorn syndrome

You might also consider contacting the following advocacy organizations.

The Wolf-Hirschhorn Syndrome Trust for the UK and Ireland provides information and support resources for individuals and families affected by WHS. You can visit the following Web site to learn more about this organization:

Wolf-Hirschhorn Syndrome Trust (UK)
Telephone: 0845-603-5338
E-mail: enquiries@whs4pminus.co.uk
Web site: http://www.whs4pminus.co.uk/

The 4p- Support Group provides information and support for children and families affected by Wolf-Hirschhorn syndrome and other related conditions.

4p- Support Group
131 Green Cook Road
Sunbury, OH 43074
E-mail: membership@4p-supportgroup.org
Web site: http://www.4p-supportgroup.org/

In general, Wolf-Hirschhorn syndrome (WHS) affects many parts of the body and is often characterized by a unique facial appearance, delayed growth and development, intellectual disability, and seizures.^[1] Although the cognitive-behavioral features of individuals with WHS have not been studied systematically, a few studies have been performed that are beginning to look at these behavioral characteristics.

In one study, children with WHS were found to be more severely impacted cognitively and had lower overall adaptive behavior than children with other deletion syndromes. However, this study also found that children with WHS often have strengths in socialization skills and are less likely to have autistic-like features than children with other deletion syndromes.^[2]

Another study, which examined a larger population of children, adolescents, and adults with WHS, found a very large range of cognitive-behavioral symptoms exhibit by individuals with WHS. Some individuals showed decreased communication and expressive language skills, while others showed advanced expressive language skills.^[3]

A study of 12 children, ages 4-17 years, showed that cognitive deficits in affected individuals ranged from mild to severe; strengths were in verbal and quantitative reasoning and socialization. ADHD was seen in 7 out of 12 children and 1 child appeared to have mild autism.^[4]

It is difficult to say whether the behavioral symptoms your daughter is expressing are related to WHS. The range of cognitive-behavioral symptoms has been shown to be very wide among individuals with WHS and some studies have shown more severe cognitive-behavioral issues than others. Given this, we recommend discussing your concerns with a genetics professional or your daughter’s personal health care provider if you have not done so already. Below, we have listed resources for finding a genetics professional in your community.

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.