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
I have just received a TSC diagnosis. What should I do next?
People new to the TSC community also often have lots of questions, and ‘information overloading’ is a common and understandable reaction to a diagnosis. You may find yourself quickly becoming an expert in epilepsy, autism, kidney problems or any of the other issues that can affect someone living with TSC.
There is never a perfect way to respond to a new diagnosis, but the important thing to remember is that these emotions and responses are normal, and you are not alone. When you feel ready, these steps might come in handy for you and your loved ones:
- Have a chat with the TSA’s support line advisers
Through the TSA Support Line (0808 801 0700 / support@tuberous-sclerosis.org) you can speak to a friendly and empathetic member of the TSA’s support team. Whether you have a specific question or just want a listening ear, we’re hear for you. We will also offer to send a TSA Welcome Pack to you. - Do some research, but only if it is helping you move forward
The TSA’s website and our support line are a wealth of information for you and your loved ones. Getting to know TSC better can help you feel in more control. But, don’t feel burdened to become an expert, as this can feel overwhelming and not be helpful. - Focus on the person, not the condition
As challenging as a diagnosis can be, it is important to not compare the person diagnosed to their peers. Celebrate good days and acknowledge achievements, no matter how small they are. - Take it a day at a time
TSC affects everyone differently, and it can be difficult to know how TSC will impact on a person’s life in the months and years ahead. By looking too far to the future, it can feel like you’re on a never-ending rollercoaster. The most important day for you and your family is today. - Think about an NHS TSC Clinic referral
We suggest that everyone living with TSC gets a referral to an NHS TSC Clinic. The clinicians in TSC Clinics are experts in the condition, and can give medical recommendations in managing and treating the condition, so that the person living with TSC gets the best care possible.
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Make a one off or regular donation
£10 Can allow us to send a welcome 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