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Beginning Your Journey

Where Do I Start?

Receiving a diagnosis of a rare genetic disease for your child is overwhelming.

Depending on the findings, it is important to have on-going conversations with your healthcare team on what to expect. Often, a TSC diagnosis can be sudden which can be even more overwhelming to process – there can be an immense amount of testing and specialist visits to coordinate all at once, which might feel like trying to drink from a firehose.

Other times, TSC might be suspected, which can lead to further evaluation after a non-threatening feature like a skin spot (such as an as “ash leaf” or a Shagreen patch) is identified.

TSC is unique, and every journey starts differently. To learn more about the type of specialists who should be involved and when click here (algorithm of who and when) to gain more insight in navigating your journey.