Batten Disease and Education

Batten disease is characterized by the progressive loss of nerve cells. It is caused by mutations in genes that encode for proteins that normally play a role in removing waste products from cells.

There are different types of Batten disease, classified according to the age of onset of symptoms. However, most patients start showing symptoms from early childhood. These include sight loss, epilepsy, speech problems, and a gradual decline in thinking ability, all of which impact a child’s education. Careful planning to meet these needs can significantly improve a child’s quality of life.

Batten disease and education

Once a child has been diagnosed, it is essential to discuss Batten disease with officials at his or her school.

Teachers and other staff members will need to be aware of the condition, so they can cope with such specific medical issues as seizures and diminished motor control, or if devices such as feeding tubes become necessary. Children may require additional time to reach certain educational goals, and may need additional support in dealing with behavioral problems caused by the disease.

Where possible, individual educational plans to support the needs of the child should be made. This can include defining learning goals tailored to the child, and developing teaching strategies to overcome issues such as sight loss.

Charities, such as the Batten Disease Support and Research Association (BDSRA) in the U.S. and the Batten Disease Family Association in the U.K., can provide both advice and support on what is needed, and in best ways of opening a dialogue with schools.

Coping with sight loss

Children with Batten disease experience gradual sight loss, and eventual blindness, which can make it difficult to engage in learning, even in learning how to read and write.

One alternative is teaching the child braille or another tactile written language. This allows continued reading and writing once vision loss begins to progress, enabling the child to move ahead with schooling and possibility improving quality of life by offering a creative outlet.

Occupational therapy may also help identify ways for the child to adapt to visual impairment in daily life.

Coping with loss of communication skills

Batten disease patients can experience a progressive decline in speech capabilities. This may be evident in the form of mumbling, stuttering, and difficulty finding the correct word. Speaking problems can make schooling difficult for a child and be a source of frustration, as they hamper asking questions and communicating knowledge.

Speech therapy is an option, as this can help retain communication skills for as long as possible.

Patients and their families may also find it worthwhile to receive training ing augmentative or alternative ways of communication, such as using manual signs. This does not have to be full sign language, but can include signs to convey common issues or to communicate about interests relevant to the individual.

Seeking help

Based on evidence from a European-based investigation, educational interventions should be started as early as possible. According to the study, the earlier the child is coached in skills that help in coping with issues such as sight and speech impediments, the greater their benefit. Coaching may include tactile reading, speech therapy, and sign language.

Learning these skills before they are needed increases a child’s chance of persisting with them, making it possible for the child to maintain independence for as long as possible, and improving overall quality of life.

