What is Wolf-Hirschhorn syndrome (WHS)?
Wolf-Hirschhorn syndrome (WHS) is a rare genetic disorder caused by the loss of a piece on the short arm of chromosome 4 (4p deletion). It is one of the so-called microdeletion syndromes.
Children with WHS often have typical external features such as a narrow face with a high forehead and broad nasal bridge, which is described as a "Greek helmet". Growth and failure to thrive, mental and motor developmental delays and epileptic seizures are common. Malformations of internal organs, such as the heart or kidneys, can also occur.
The severity of the symptoms varies greatly. With good medical care, therapies and aids, many children can make progress and improve their quality of life.
Aids that are frequently used for Wolf-Hirschhorn syndrome (WHS):
Aids and support for everyday life
As Wolf-Hirschhorn syndrome places very individual demands on care and support, it is crucial to provide the right aids:
- Safety with epilepsy: To protect the child during seizures, epilepsy sensor mats for the night and safety helmets for the day are important safety factors.
- Mobility & uprightness: Individually adapted rehab buggies or wheelchairs provide support in the event of motor difficulties. In order to promote bone density and stabilize the spine, standing trainers or walking aids are often an integral part of therapy.
- Stability when sitting: As many children have low muscle tone, a therapy chair with appropriate head and trunk support provides the necessary security when eating and playing.
- Augmentative and Alternative Communication (AAC): As speech development is often severely delayed, gestures, communication boards or simple electronic speech output devices help to improve communication in everyday life.
- Feeding aids: In the case of pronounced feeding disorders, specialized drinking cups or mobile feeding pumps (in the case of tube dependency) can ensure the supply and relieve the parents.
Learn more
You can find more helpful information about Wolf-Hirschhorn syndrome (WHS) here:
www.orpha.net