Tips from Parents
Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during this phase. These tips and guides may not answer all your questions and our TSC Support Navigators are available to help you at any time.
Making appointments with multiple providers can be exhausting and it can be tough to predict how to prepare for new consultations to ensure that the appointment is successful. Learn more on How to Have a Successful Appointment and Prescription Management.
As this is the first phase of your journey, there are many laboratory and diagnostic tests that will be mentioned along the way. Having an understanding will help you feel more empowered and confident as you have open conversations with your healthcare team. Knowing what to expect and when to proactively assess a situation is critical with this diagnosis. Building a solid foundation now will make a huge difference during your journey. Learn more here on Understanding Medication and Testing.
When you are ready, learning about common TSC manifestations during childhood is a helpful guide to proactively give insight on what to look out for during the next phases of the journey. Learn more on our website on Signs and Symptoms of TSC
Discussing a new diagnosis with your family is also a process that can be challenging during this phase. Each situation is unique and disclosing personal information with friends and family should occur only when you are ready to have that discussion. This part can be difficult, so here is a letter you can share with friends and family to help explain the diagnosis when you might not have yet found the words to say.
This journey can feel lonely at times but connecting with another family that has navigated these steps before you can make all the difference. To gain my insight on caregiver selfcare please go to caregiver mental health under the resource section. Click here to learn ways on how you can connect with the TSC Community or reach out to our Support Navigators for assistance.