It is common for medical providers to be unfamiliar with TSC, including neurologists, and primary care providers (PCPs). It is crucial to have 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. For those who are considering traveling across state lines, please go to the insurance barriers page in the Medical Challenges section to learn more on how to proactively prevent issues from occurring. You can locate a TSC clinic here.