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Date: 3 June 2020
Tuberous Sclerosis Complex
TSC is a rare genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. These growths may also be referred to as tumours but they are not cancerous. When they cause problems it is mainly because of their size and where they are in the body.
It is important to keep in mind that the impact of TSC varies considerably, with some people being relatively mildly affected (they may not even know they have TSC) and others being more significantly affected.
Each month 10 babies are born in the UK with TSC, and an estimated 1 million people world-wide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood.
Thanks to research findings and with improved medical care, people with TSC can expect to live healthier lives with a normal life expectancy, in most cases.
People with TSC may be diagnosed in the course of investigation, during treatment for problems with specific organs or during genetic screening of family members. For example, diagnosis may follow the finding of heart tumours on routine antenatal ultrasound scans. It may present in babies with the onset of infantile epilepsy or with a diagnosis of autism in children. The development of skin problems in adolescents or the onset of kidney problems in adults may be signs of TSC. It is important to know that TSC affects each individual differently.
There is no single clinical feature that is absolutely specific to TSC. Instead, the diagnosis of TSC is based on a careful physical examination in combination with imaging scans and/or genetic screening/testing, following revised, peer reviewed, recommendation guidelines.
About the clinic
The clinics will be held in the newly developed ‘Centre for Rare Diseases (CfRD) in the Heritage Building of the Queen Elizabeth Hospital. This is a purpose built refurbished area dedicated to improving the care and access to research for patients with rare diseases such as those affected by TSC.
The clinic aims to:
- provide a dedicated, TSC specific, multi-disciplinary 'one stop' service for all newly diagnosed / suspected TSC patients and those already diagnosed
- deliver a dynamic model of care which reflects patient clinical experience
- co-ordinate clinical care and specialist investigations according to current recommendation of national and international guidelines of best practice
- provide access to patient support groups and patient information
- provide counselling and support for patients and relatives
- provide opportunities to access/participate in research aimed at improving the outcomes for people with TSC
How to contact the clinic team
Graham Lipkin – Renal/Nephrology Consultant
Tel: 0121 371 5837 (Secretary)
Emily Cooper – TSC Clinic Nurse Specialist
Tel: 0121 371 8708
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