People with tuberous sclerosis are likely to be able to live independently but will need medical care and attention throughout their lives to monitor their condition and growth of tumours. Some people report that it is difficult to live with a condition where they do not know how it will progress or develop. The condition can be life limiting, depending on its severity and what areas of the body are affected.
Some people who are affected severely by tumours, which may develop in the brain for example, will have a very different experience of tuberous sclerosis compared to other people with the same condition. Some people do require care to live independently.
If you are a parent or carer for a young person with tuberous sclerosis, you may have lots of concerns, worries and questions about how best to provide care whilst also looking after yourself. Carers Trust are a charity supporting unpaid carers, who provide information on money, benefits, carer assessments, health and wellbeing, laws and rights, and much more.
Some people find it helps to understand tuberous sclerosis if they hear other people’s stories and experiences. This US-based tuberous sclerosis charity provides videos of people who are affected by the condition, which may be of interest to you.
There are some aspects of daily life that may become difficult if you have tuberous sclerosis symptoms, or related conditions such as epilepsy or kidney problems.
These challenges differ so much from person to person, it is impossible to list all the potential symptoms, but here are some examples:
• Autism caused by tuberous sclerosis: a child or adult with autism may present a host of behaviours that are challenging, and may find it difficult to deal with everyday social norms, expectations and communication
• Epilepsy caused by tuberous sclerosis: symptoms may include seizures, which may be unpredictable and raise issues of safety, care, inability to drive, and so on
• Skin conditions caused by tuberous sclerosis: may mean a person has problems with self-esteem and confidence, which can affect lots of areas of their life
• Lung tumours caused by tuberous sclerosis: more common in women, these can cause breathing difficulties similar to chronic obstructive pulmonary disease (COPD). Breathlessness can lead to difficulty getting around and so on
• Brain tumours caused by tuberous sclerosis: these can lead to lots of different symptoms and difficulties with day-to-day life. Depending on where the brain is affected, tumours can cause problems with speaking, eating, drinking, mobility, motor skills, thought processes and behaviour
You may wish to seek an assessment and support from an Occupational Therapist, who may be able to look at the tasks you are having difficulty with and recommend ways to adapt these to make them easier for you. They may also be able to recommend daily living aids for tuberous sclerosis that may help undertake everyday tasks more easily. Read on to find out more about these products for tuberous sclerosis.
Young people affected by tuberous sclerosis may have special educational needs. Read more about issues related to having tuberous sclerosis as a child here.