Smith-Magenis Syndrome Foundation UK
Left to thank all of our supportive friends and family. Your continued support and understanding is more appreciated than words can express. Love you!
Dedicated to all of the parents.
Broadly focusing on the diagnosis and early planning aspects of Smith-Magenis syndrome, this film shows a number of different families that have children, adults or siblings with SMS answering the following questions:
It is often very difficult to know when when an individual with SMS is fighting an illness. Two SMS characteristics include significant speech delay and a high pain tolerance, which make it very difficult to determine when they are not feeling well or where it hurts.
New medications, including psychotropic drugs, are already improving the quality of life for some people with SMS. Unfortunately the published data about the optimal intervention and behavioral strategies in SMS is limited to anecdotal and experiential findings. Many parents report that the use of psychotropic medications benefit SMS individuals with respect to stabilizing mood swing.
On a positive side, children with SMS are frequently described as loving and caring, eager to please and with a good sense of humour. They like adult attention and enjoy interacting with adults. Children with Smith-Magenis Syndrome tend to be friendly and outgoing. They have a great sense of humour and an eagerness to please.
Despite all of the difficulties families face with SMS, we have the unique opportunity to live in the moment and cherish each success and be a part of an amazing community of parents, caregivers and professionals who teach us, listen and understand…for that I am grateful.
Registered UK Charity 1072573 (CIO 1186647)
Registered Scottish Charity SC044841
