While there is currently no cure for children living with CLN5, there are a number of specialists with expertise who can help families affected by CLN5 manage their disease and its symptoms.
Children living with CLN5 benefit from having a team of healthcare professionals and assistive devices to help manage the progressive impact of their disease. The daily needs of an individual with CLN5 can be supported by some or all the following healthcare providers. These needs may evolve as the child moves into adulthood or as the disease progresses.
Click on each circle below for more information about the role each healthcare provider may play to support the daily needs of an individual living with CLN5:
In addition to the care team that can help to manage the various symptoms associated with CLN5 disease, people caring for a child with CLN5 disease may also find support through social and educational plans. These plans support the family as symptoms progress.
- Batten disease is the common name for a broad class of rare, inherited disorders or diseases of the nervous system also known as neuronal ceroid lipofuscinoses, or NCLs. In these diseases, a defect in a specific gene triggers a cascade of problems that interferes with a cell’s ability to recycle certain molecules. The disease has several forms that share some of the same features and symptoms but vary in severity and age when symptoms first begin to appear. Each form is caused by a variant in a different gene. Although “Batten disease” originally referred specifically to the juvenile-onset form of NCL, the term Batten disease is increasingly used to describe all forms of NCL. The disease ultimately leads to shortened lifespan. Fact Sheet. (2019, May 14). Retrieved June 19, 2019, from link.
- CLN5 disease. (n.d.). Retrieved June 19, 2019, from link.
- CLN5 disease. (2019, June 11). Retrieved June 19, 2019, from link.