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New diagnosis

First steps after a Tuberous Sclerosis Complex diagnosis and how we can help

Every new diagnosis of Tuberous Sclerosis Complex (TSC) marks the beginning of an unexplored and unexpected journey for individuals, families and even whole communities.

Every new diagnosis of Tuberous Sclerosis Complex (TSC) marks the beginning of an unexplored and unexpected journey for individuals, families and even whole communities. It is normal to wonder how TSC might impact on you or your family. As with all rare diseases, a TSC diagnosis can feel isolating, daunting and even scary.

You are not alone in your diagnosis – the Tuberous Sclerosis Association (TSA), the ever-growing TSC community and the clinicians and professionals dedicated to TSC are here to support, advocate on behalf of and improve the lives of you and your family.

How can the TSA support me and my family?

The TSA works hard to help everyone affected by TSC equally. We are the only UK charity focused on tackling issues surrounding TSC and we have three charitable objectives:

  • Make a positive impact on the health and wellbeing of people living with TSC, their families and carers
  • Drive world-leading research into tools, technologies and treatments which reduce or eliminate the effects of TSC
  • Advocate on behalf of the TSC community for the innovation and integration of medical and social care services for people affected by TSC in the UK

We work closely with dedicated TSC clinics across the UK to try and be there at the very start of everyone’s TSC journey, so that we can support and work with newly diagnosed individuals and families from the beginning of their TSC diagnosis and then be on-hand throughout their lives

I have just received a TSC diagnosis. What should I do next?

There are no right or wrong answers in how you proceed following a TSC diagnosis, with the steps following diagnosis depending largely on the circumstances of every individual and family. However, we would broadly recommend the following:

  • Learn more about TSC as a whole, including as how it can affect people living with the condition and the impact it might have on daily life. You will find lots of great information in the ‘Information and support’ and ‘Life with TSC’ sections of our website, or by talking to our dedicated Support and Information team
  • If appropriate, request a referral to a specialist TSC clinic close to you. There are clinics throughout the UK, with specialist TSC-focused clinicians in each
  • If appropriate, ensure that an individual care plan has been set-up to ensure that you or your family member gets the care that they deserve and should expect
  • Get involved in the TSC community. You are not alone in your TSC journey, with thousands of active, enthusiastic and understanding members of the TSC community in the UK. Join the TSA and other independent TSC social media pages, come to our annual events or get involved in raising awareness and fundraising for the TSA

I still have questions or concerns about TSC and how it might affect me or those around me

Our dedicated Support and Information team is here to help you and everyone in the TSC community. Contact them at any stage of your TSC journey, with any TSC-related questions no matter how large or small.  Our trained and TSC-dedicated  advisers enable the TSC community across the UK to access a safe environment to ask questions and confide, such as first steps following a recent diagnosis, outreach for emotional support or help filling out forms or accessing third-party support.

Download resources

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.