Tuberous-Sclerosis.org
Title
Tuberous Sclerosis Association, UK
Description
The Tuberous Sclerosis Association (TSA) was formed in 1977 by a group of parents, affected individuals and doctors interested in promoting greater understanding of the condition and providing mutual support for affected families. In the years that have followed the TSA has expanded and developed its services, both to the individuals and families it supports and to doctors and other professionals interested in broadening their knowledge of this disorder.
A diagnosis of tuberous sclerosis, also known as tuberous sclerosis complex, comes as an enormous shock. Most people have never heard of the condition before and they experience bewilderment, isolation and devastation, emotions understood only by those who’ve been through a similar trauma. They need information, encouragement and support and the TSA can help right from the start. Picking up the phone and making that first call to us is frequently the first step towards coming to terms with the diagnosis and accepting that whilst things in your life may have changed, life is still worth living . Organised by those with personal experience of tuberous sclerosis, we have a wealth of experience and understand the needs of people who contact us for information, advice and emotional support.
Advice and Support: The TSA provides accurate and up-to-date information about tuberous sclerosis. It can put families or individuals in touch with one another and offer advice on a range of issues associated with tuberous sclerosis, as well as recommending additional sources of help. Specialist Advisers: The TSA has appointed 3 TS Specialist Advisers to support families and individuals with tuberous sclerosis. They have a wide remit, which includes visiting, listening and advising on the effects of TS, as well as offering advice and intervention in education, social welfare, health and personal needs. They also give presentations on tuberous sclerosis to care homes or other establishments from time to time.
Additional Information
Related Domains
- Advice
- Autism
- Britain
- Bromsgrove
- Charity
- Conditions And Diseases
- Disability
- Disabled
- England
- Epilepsy
- Europe
- Gb
- Health
- Helpline
- Neurodegenerative Diseases
- Neurological Disorders
- Sclerosis
- Ts
- Tsa
- Tsc
- Tuberous
- Tuberous Sclerosis
- Tuberous Sclerosis Association
- Uk
- United Kingdom
- Worcestershire
- Conditions and Diseases
- GB
- Regional
- Society and Culture
- TS
- TSA
- TSC
- UK