TAKE CHARGE

KNOW YOUR TSC HEALTH CARE TEAM

TAKE CHARGE TAKE CHARGE

Because tuberous sclerosis complex (TSC) is only a part of who you are or who your loved one is, knowing how to monitor the condition is key to enjoying life.

And because many parts of the body can be affected—at the same time or at different ages—people with TSC may see different specialists, depending on their signs and symptoms.

You may need to see a neurologist (for brain-related issues), a nephrologist or urologist (for the kidneys), a dermatologist (for the skin), or a pulmonologist (for the lungs), as well as other specialists.

Below are some tips to help start the conversation with any of these specialists.

Talking to Your Doctor about TSC

Part of staying curious and involved in your care is having open, honest conversations with all your doctors. Work together with your doctor to develop an ongoing treatment and monitoring strategy. Don’t be afraid to take the lead in the conversation and state your treatment goals. Bring a caregiver with you to your appointments to take notes.

To stay connected with your care team, and learn all that you can about TSC, ask the following questions:

  • What might I expect during the course of this disease?
  • What can I do to monitor this condition?
  • Is there more I can do to make sure I catch signs and symptoms early?
  • What more should I know about my condition?

Remember, Regular Screening and Monitoring Is Key

Being an active participant is part of living well with a lifelong condition. And your doctor will appreciate you being passionate about and involved in learning and looking ahead.

FIND TSC SPECIALISTS

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