To provide better support for families and carers we have allocated trustees or representatives to different regions around the country. As our national conference happens only every two years each region will endeavour to have regular meetings together so that you can get to know people in your locality. Because some of the regions are geographically challenging and life often gets in the way, we are also reliant upon you organising your own events too. We will do all we can to support such events and can often support them financially. Please contact your nearest trustee for more details.
Information about these regional meetings will be printed in the newsletter or posted in the events section of this website, but if there isn’t a meeting in your area any time soon and you want to meet other people connected with Angelman Syndrome you’ll be more than welcome to attend meetings in other areas.
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Profound communication disorder is one of the four diagnostic features of Angelman Syndrome. It has been estimated that 85% of people with AS do not use natural speech. Even those who do have speech are unlikely to meet all of their communication requirements so use Augmentative and Alternative Communication (AAC) to help express themselves.
Epilepsy, often severe and hard to control, is present in 85% of patients within the first three years of life, although less than 25% develop seizures during the first year. Febrile seizures often precede the diagnosis. Most frequent types are atypical absences, generalized tonic-clonic, atonic or myoclonic seizures, with multiple seizure types occurring in 50% of deleted patients.
Management of behaviour can be a problem in Angelman Syndrome. A recent study shows that aggressive behaviour in Angelman syndrome is more likely to occur when levels of adult attention are low. This may suggest that individuals are engaging in the behaviour to reinstate attention that they find rewarding or enjoyable.
By far, one of the things parents, carers and the wider family struggle with the most is the issue of sleep, or lack of it. Unfortunately, the bottom line is that most (although not all) individuals with AS just need less sleep than their typical peers and there isn’t a single quick fix to this. What works for one family may not for another.
As children with Angelman Syndrome age, progressive side-to-side curvature of the spine (scoliosis) may become apparent occurring in approximately 10% of children, The problem is more common in adulthood with about 40% of adult individuals with Angelman Syndrome requiring braces or surgical correction. This should be regularly monitored in all children and adults with the syndrome.
The brain receives signals from both external and internal stimuli continually. Most people are aware of Sight, Sound, Touch, Taste and Smell as senses. However, we also have vestibular (balance), proprioceptor (awareness of our body position in space), pain and temperature receptors. The digestive tract is also considered have its own sensory system. When the signals between the sensory receptors and the brain get mixed up, it is known as Sensory Processing Disorder.
With age, people with Angelman Syndrome become less hyperactive and the sleeping problems tend to improve. Most people with the syndrome will have intellectual disability and limited speech throughout their life. In later childhood, the seizures usually improve, although they may return in adulthood. In adults, some mobility may be lost and joints may stiffen up. People with Angelman syndrome usually have good general health, are often able to improve their communication and acquire new skills throughout their lives.
AngelmanUK is very proud to be supporting the UK’s only specialist Angelman Syndrome clinics. In conjunction with the NHS, we are holding 3 or 4 clinics in Manchester each year for both adults and children with AS.
A part of AngelmanUK’s work that is growing is support for the brothers and sisters of people with AS, as we recognise that they will have their own needs. If siblings of any age want to talk with someone in a similar position about how they feel or the issues they’re facing we have people who can lend a listening ear – often siblings are surprised that there are others out there that have experiences, both happy and sad, that are the same as theirs.
Most individuals with Angelman syndrome will need some specialist equipment, some more than others. Only time will tell what, if anything, your child will need and adopting a wait and see attitude, rather than trying to plan immediately after diagnosis for every future possibility for your child, will save you a lot of time, worry and expense.