Psychosocial Cluster

Comprehensive family centred care consists of both psychosocial assistance and practical support. A case manager overviews the individual’s trajectory and coordinates care. Support can have a beneficial effect on health and reduce healthcare expenses. We recommend seeking help from such a case manager if there is one in your area.

Family support groups and associations

Families may feel empowered when they connect with and receive support from others in a TSC family support organisation. Search for patient groups and support communities in your area. Some organisations are provided in the resource panel.

Educational support, career counselling, and coaching at work

The employment and professional lives of those with TSC and their family members are likely to be affected by TSC. It could be affected by reduced work productivity, increased absenteeism or activity impairment. Young individuals with TSC would therefore benefit from educational support and help with studying. In some regions there are educator mentor programs developed to support school systems in understanding the learning needs of children with TSC. They provide one-on-one support to any professional in the school system needing education and support in understanding the educational complexities of TSC. More information on what to seek for educational support can be found in the Scholastic and Neuropsychological clusters, links provided in the resource panel.

Financial support or advice

Living with TSC can often impact not only physical and emotional health, but also the financial security of individuals and families. This might be due to a reduction of working hours for caregivers and the costs of supports. Financial support might be helpful for accessing available supports. Some countries and states offer financial support programs for individuals with different disabilities. It might help to search government official sites or contact government social development or healthcare offices to ask for financial support alternatives or pensions. The Tuberous Sclerosis Association in the UK has provided a list of possible financial supports available for families in the UK – please see the resource panel. We recommend you contact them for help accessing this support. Local TSC or rare-diseases associations do not usually have the possibility to offer financial support themselves, but they might advise you on how to proceed with local authorities or other sources.