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TSC-Associated Neuropsychiatric Disorders (TAND)

TSC-Associated Neuropsychiatric Disorders (TAND) can have a significant impact on the lives of people living with Tuberous Sclerosis Complex

Nine out of every 10 people living with Tuberous Sclerosis Complex (TSC) develop TSC-associated neuropsychiatric disorders (TAND) at some point in their lives.

TAND disorders can have a serious impact on family life, with the number one request from individuals and families affected by TSC being for advice and support to help them manage TAND-related symptoms.

There has previously been a hesitancy amongst some clinicians to actively treat or manage TAND issues in people living with TSC. The Tuberous Sclerosis Association (TSA) is working hard to make sure that this changes, so that people affected by TAND get the support that they deserve.

TAND symptoms can include:

  • Autism spectrum disorder
  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Anxiety
  • Depression
  • Impulsivity

Introduction to TAND

The TSA hosted a special Belfast clinic meeting, including a TAND section where Professor Petrus de Vries (Professor of Child & Adolescent Psychiatry, University of Cape Town) provided an introduction to the area.

The session provides a great overview of TAND, our understanding of the area and why it is such an important area for future research.

TAND in times of uncertainty

During the covid-19 crisis, the TSA hosted a special ‘TAND and covid-19’ virtual meeting, featuring Prof Petrus de Vries (Professor of Child & Adolescent Psychiatry, University of Cape Town) and Prof Anna Jansen (Head of Child Neurology, UZ Brussels).

Although focused on covid-19, the session includes many helpful pieces of advice for living with TAND during all times of uncertainty.

Diagnosis and management of TAND in people living with TSC

The diagnosis and subsequent management of TAND in people living with TSC should be broadly no different to someone who is diagnosed with the same disorder but does not live with TSC. However, some differences will remain, such as a diagnosis of autism possibly taking longer due to developmental delay in an individual.

When a TAND diagnosis is made in a person living with TSC, it is recommended that the person’s TSC clinic has established links and care pathways with developmental paediatric, educational and Child and Adolescent Mental Health Service (CAMHS) specialist services to enable a seamless, integrated, responsive and timely multidisciplinary approach that includes consultation and liaison.

TAND can include the following:

Autism can impact on a person’s communication and social ability, interests and behaviour. Strict routine and avoiding change can be extremely important to someone living with autism and a person living with autism may struggle to understand what someone is thinking or feeling.

Autism is a relatively common occurrence in people living with Tuberous Sclerosis Complex (TSC), with estimates that somewhere between one in two and one in four people living with TSC developing autism.

We do not have a clear answer for why autism is significantly more common in people living with TSC compared to people who do not have the condition. However, it is believed that there are changes in how different parts of the brain of someone living with TSC connects and works. It has also been suggested that TSC-related seizures correlate with the likelihood of autism developing. For us to have a concrete answer behind the link between TSC and autism, more research is needed.

People living with ADHD may have problems paying attention, act impulsively or be over-active. ADHD is more common in people living with TSC than people without the condition, and is also common people with autism.

It is possible to confuse a seizure as being ADHD, with absence seizures and complex partial seizures resembling a person with ADHD who is losing their attention.

Children living with TSC and ADHD may have particular trouble focusing and concentrating at school, in particular with multitasking in the classroom. It is important to work with schools and educational groups to ensure that children living with ADHD receive an individual care and education plan, to ensure that the child reaches their potential.

Up to one in every two people living with TSC will develop an anxiety disorder at some point in their lives, with the impact of living with TSC at different stages of life increasing the likelihood of anxiety developing.

A person living with an anxiety disorder may worry excessively, act not as normally would or have panic attacks. Symptoms can include feelings of panic, shortness of breath and palpitations.

The Tuberous Sclerosis Association (TSA) and other TSC groups worldwide are working hard to ensure that people living with TSC who show signs of TAND get the treatment and care that they deserve, not only for TSC but also for TAND.

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£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.

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