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Beginning Your Journey

Where do I go

It is common for medical providers to be unfamiliar with TSC, including neurologists, and primary care providers (PCPs).

It is crucial having local healthcare team involvement in your care team. Finding a good fit is essential as these healthcare team members will be your expert and along with you as your biggest advocate as you start your TSC journey. Connecting with a local or out-of-state TSC clinic to help guide clinical treatment options is appropriate. If you do not have access to a local TSC clinic, you can also make an appointment with an adult or pediatric neurologist experienced in epilepsy. Many of our TSC experts can offer provider-to-provider recommendations and our Support Navigators can assist with this process.

Insurance coverage can also be a factor in ensuring you do not experience delayed intervention and care. It is important to consider if out of state healthcare is right for you. Here is a helpful guide(Is crossing state lines best for me?) to help decide the best options for your unique situation. You can locate a TSC clinic here.