Why a Powered Profiling Bed is Essential For Children With Muscular Dystrophy
For adults and children who suffer from a debilitating medical condition, having a specialist bed that meets their specific needs forms a vital part of their day-to-day care. A specialist bed can provide real comfort and relaxation to a person who suffers from such a condition. This can help them to sleep soundly and, as we all know, a good night’s sleep helps foster good general health and mental well-being. A bed that is unsuitable though may cause pain and discomfort and thereby make it difficult for the user to get a good night’s sleep. It may even cause harm by aggravating their condition.
According to Muscular Dystrophy UK:
“Electric beds are invaluable for boys with Duchenne muscular dystrophy (DMD) and children and adults with all types of muscular dystrophy, spinal muscular atrophy (SMA) and related neuromuscular conditions”.
Their full document on the use of Power Profiled Beds, (the Muscular Dystrophy Campaign’s Adaptations Manual (chapter 8c)) can be found on their website – http://www.muscular-dystrophy.org.
Muscle-wasting conditions are very rare, affecting just over one in every 1,000 people. As a result, some health professionals may never come across anyone with a muscle-wasting condition and may not know much about them. There are however over 70,000 people in the UK with variants of this condition. Many of these rely on charities such as Muscular Dystrophy UK and Duchenne UK for help, support and advice with tackling Muscular Dystrophy.
One of the most debilitating medical conditions is Duchenne muscular dystrophy (DMD). It is a genetic disorder characterised by progressive muscle degeneration and weakness. In the UK about 2,500 people have DMD. (A further 67,500 people suffer from other muscle wasting conditions). DMD affects mostly boys. If a child has this condition, the symptoms of
muscle weakness usually start when he is about three or four years old. The condition will not necessarily progress at the same rate for all children but it does follow a general pattern. As the child gets older the muscles become weaker and this increasingly affects the child’s mobility. Running, jumping and climbing become more and more difficult, the child develops an obvious gait and falling can become frequent just before he loses the ability to walk independently. In the teenage years, the arms, chest and neck muscles can also be affected. Even those children who retain some degree of mobility may have skeletal deformities and have trouble getting up from a lying or sitting position.
At present, there is no cure for DMD but research is underway in many countries to understand what causes the condition, to apply that understanding to the development of effective treatments, and find a cure. In Britain, the charities Duchenne UK and Muscular Dystrophy UK are the main organisations that help raise funds to support research and clinical trials carried out under the NHS into DMD. They also provide information, advice, and support for people with DMD and can help sufferers to obtain the equipment, services and financial assistance they are entitled to. Detailed information on their activities and the services they provide can be found on their websites www.duchenneuk.org and www.musculardystrophyuk.org.
Centrobed supplies beds that are specifically designed for children who have DMD. Parents of children who have this condition have told us that since taking delivery of one of our beds their child finds it much easier to find a comfortable sleeping posture and that this has greatly improved their child’s quality of sleep. The main design feature of our beds that helps children sleep well at night is that the beds have many variations of position. This allows a bed’s profile to be adjusted to suit the sleeping posture that is the most comfortable for the child. The benefit of this feature is particularly welcome if a child suffers from additional health problems. In some cases, for example, children with DMD also suffer from breathing problems. These problems can be eased by the child’s parents slightly raising the height of the head end of the bed.
A recent letter from a parent to Centrobed – read as follows:
“Firstly, the cool design and look of the bed is so pleasing….
As for the comfort and practicality…. Christopher is so much more comfortable now at night.
With so many variations of positions, we can adjust the bed to suit his needs to make him as relaxed as possible…..”
Muscular Dystrophy UK have provided a short article on the eight conditions requiring a Power Profiled Bed – this can be downloaded from their site, alternatively request a copy by following this link.
