About

What

Wolf–Hirschhorn syndrome (WHS), also known as chromosome deletion Dillan 4p syndrome, Pitt–Rogers–Danks syndrome (PRDS) or Pitt syndrome, was first described in 1961 by Americans Herbert L. Cooper and Kurt Hirschhorn and, thereafter, gained worldwide attention by publications by the German Ulrich Wolf, and Hirschhorn and their co-workers, specifically their articles in the German scientific magazine Humangenetik. It is a characteristic phenotype resulting from a partial deletion of chromosomal material of the short arm of chromosome 4 (del(4p16.3)).*

Wolf-Hirschhorn syndrome or 4p- affects many parts of the body, it is caused by a deletion of genetic material near the end of the short (p) arm of chromosome 4.
The major features of this disorder include a characteristic facial appearance, delayed growth and development, intellectual disability, and seizures.

Children affected by Wolf Hirschhorn syndrome have delayed growth and development and weakened muscle tone. This often starts before birth and can result in “failure to thrive” some children may have to use feeding tubes when born to increase calorie intake and help aid feeding and this may continue throughout their lives, each child is different and it’s important to seek medical advice.

It is important to remember that there are many therapies that can help aid muscle tone and delayed development, as you look through the website you will see many affected benefit from physiotherapy, occupational therapy, speech and language and many more.

Speech is also delayed, those affected have strong socialization skills yet verbal communication and language can be weaker. There is lots of aids to help with this such as sign language, makaton, using symbols and picture cards and verbalisation.

Please remember that Wolf Hirschhorn ranges from mild to severe and this website has been built to support friends and family affected, this site is run by volunteers and we have no charity funding but please do not hesitate to get in touch and we can point you in the right direction.

Where

There has been cases of WHS all over the world. This map shows the different places throughout the UK and the World that people diagnosed with WHS live.

Want to see a location added to the map? Please get in touch via the contact page.

Our Aim

Our aim with this website is to help spread awareness of WHS and also provide a voice for the families affected by the condition alongside the professionals working with it. We also hope it may in time help parents who have a newborn child with WHS to be able to reach out for support and also see they are not alone while being able to read & learn from the experiences of others.