An incredibly complex condition, Charge Syndrome has several implications for a person's life. One of the key ways in which Charge Syndrome has historically affected a sufferer's existence is by limiting their life expectancy. This article explains the impact that Charge Syndrome has on a person's life expectancy and details some of the ways in which life expectancy can be improved for Charge Syndrome sufferers.
Charge Syndrome is a genetic condition, meaning that sufferers are born with it. Charge Syndrome is a name for a collection of symptoms that are seen together in children born with the condition. Charge is an acronym for what used to be seen as the key symptoms: Coloboma (i.e. a hole in the retina, cornea or one of the other structures in the eye which can result in blindness or very poor vision), Heart defects, Atresia of the Choanae (the blocking of the nasal passages (usually with a growth of soft bone), Retardation of growth and development and Ear problems (including deafness). Though these symptoms are no longer seen to be the sole ways of diagnosing Charge Syndrome, the name has stuck. Many additional symptoms are now recognised as part of this syndrome, including problems with vision and balance and learning difficulties.
This question can be answered in two ways. In the past, Charge Syndrome greatly reduced a child's life expectancy, because they were born with birth defects that threatened their life in ways that could not always be cured. Life threatening symptoms of the syndrome include the blocking of the nasal passage (which makes breathing difficult) and heart problems. Advances in medicine have meant that Charge Syndrome sufferers can now have these symptoms treated as soon as they are born. In addition, Charge Syndrome sufferers experience numerous symptoms that can require extensive, life long care. Sufferers who are both deaf and blind and who have mobility problems and learning difficulties will usually need a 24 hour carer to ensure that they can have the best possible quality of life. However, in the present day the question of life expectancy can be answered in a positive way. With the right care, Charge Syndrome patients can expect an average human lifespan.
Specialist care is often necessary for Charge Syndrome sufferers throughout their life, as well as immediate medical attention at birth to deal with symptoms such as the blockage of the nasal passage and heart defects. At birth, the medical team's first concern is to provide the newborn with a clear airway. As they begin to grow up, they may need mobility aids, assistance with learning and (in some cases) extensive assistance with mobility. These can all be provided by parents and specialised carers to ensure that a person with Charge Syndrome has the best possible quality of life and that they can live for the seven decades that most humans are now reaching.