What is Batten Disease?

Batten Disease is fatal genetic disease which damages cells causing the person to suffer progressive neurological impairment.

Batten disease is one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).

Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes:
• Seizures
• Visual impairment/blindness
• Personality and behavior changes
• Dementia
• Loss of motor skills and the ability to walk, talk and communicate

Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death of our children and adults.
What Causes Batten Disease?
Our cells contain thousands of genes that are lined up along chromosomes. Human cells contain 23 pairs of chromosomes (46 in total). Most genes control the manufacture of at least one protein. These proteins have different functions and include enzymes which act to speed up molecular chemical reactions. The NCLs are caused by abnormal genes, which are unable to produce the required proteins. As a result, the cells do not work properly and this leads to the development of symptoms associated with these diseases.
Are there any treatments?
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.

Find Out More

You can find out more and get support in the UK from BDFA
Other useful links:

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