Tuberous Sclerosis Complex Ireland
Tuberous Sclerosis Complexis a rare genetic disorder which causes benign tumours to grow throughout the body. An individual with Tuberous Sclerosis Complex is missing part of the gene that regulates how their cells grow.
As a result benign tumour's can then grow in the brain, eyes, heart, kidney, lungs, skin and other organs. An individual may be born with tumours or develop them during their lifetime.
There are approximately 6 children born in Ireland with Tuberous Sclerosis Complex every year .
Up to 90% of individual’s with Tuberous Sclerosis Complex have epilepsy which is often very difficult to manage.
Up to 50% of individuals with Tuberous Sclerosis Complex also have autism .
There are also neuropsychiatric conditions associated with the disease such as neurobehavioural difficulties.
Tuberous Sclerosis Complex can also impact a child’s development and some children will have intellectual disabilities.
Due to the multiple organs involved there is a need for very regular surveillance and individual’s have a catalogue of appointments they need to attend .
The burden of disease for the individual and the family can be huge . Currently there are noTuberous Sclerosis Complex specialised clinics in Ireland. Tuberous Sclerosis Complex clinic can play a vital role in improving the lives of people withTuberous Sclerosis Complex .
overview
Tuberous Sclerosis Complex Ireland is a small volunteer- run charity founded by parents of children affected by TSC. Our mission is to raise awareness of TSC in Ireland and provide support and information to individuals and their families who are living with the condition.
where your money goes
Increasing our visibility to health professionals working with people with TSC. We will be co-hosting The European TSC association scientific meeting in Dublin in July which brings medical professionals in Ireland and Europe together to network and discuss the latest research and evidence in TSC.
Provide support and information to families of those newly diagnosed with the condition in what can be a very overwhelming time
Developing up to date patient information leaflets
Provide improved information and education through webinars, our website and social media
Increased avenues of accessing support such as telephone support line
Providing more frequent in- person events to help further build our community.
Increase our role in advocating for improved access to appropriate medicines and more integrated health care services such as a specialist TSC clinic.
history
Highlights of our work to date have been our family fun days; our annual conference-style meetings featuring expert national and international speakers and providing support and advice via our email/Facebook page/ WhatsApp group
Unit 28B,
+353 (0) 93 52467
