What to do at diagnosis ?

How to react to the announcement of TSC diagnosis ?

As early as the announcement of the diagnosis, it is essential to set up a medical follow-up in an hospital environment for optimal care. According to the symptoms (epilepsy, cutaneous problems, mental retardation, affected kidneys…), you will have to see frequently one or several specialized hospital departments.

Therefore, we recommend a thourough medical exam in a TSC Reference center.

Who should you contact?

You can join TSC patient associations. They can be found in many countries today (for example in the United Kingdom, Italy, France, Germany or in the United States). They contribute to inform about Tuberous Sclerosis, improve patient management and support research programs.

To help families at the announcement of the disease, a psychological help is advised, but only the parents can decide when it is appropriate.

Whether you are personally concerned by the diagnosis or the relative of a TSC child, you should know that you are not alone. We can all benefit from the experience of other families and to contribute to create a stronger mutual support.


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