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Caregiver Mental Health

Being a caregiver can be equally rewarding and overwhelming at the same time – it is completely normal to feel this way. Many caregivers start this journey as parents, yet

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Early & Childhood Years

It is common for medical providers to be unfamiliar with tuberous sclerosis complex (TSC), including neurologists and pediatricians. It is crucial to have a local neurologist and pediatrician involved in

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Estate & Financial Planning

What is estate and financial planning? This topic can seem overwhelming with the breadth of information available on the topic. This guide will help you get familiar with the process

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Employment & Vocation

For some people, participating in a vocational, educational, or other type of activity can be empowering and may provide purpose. Vocational and rehabilitation options for people with disabilities range from

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Working with Your Healthcare Team

You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding

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Medical Access Issues

Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance

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Choosing a Healthcare Provider

It is common for medical providers to be unfamiliar with TSC, including neurologists, pediatricians and primary care providers (PCPs). It is crucial to have a local healthcare team involved in

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Spotlight on TSC Alliance

2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join

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Teeth

Oral involvement in TSC can include gum fibromas and dental pits. The fibromas appear as overgrowth of the gums and can be quite extensive, although this finding is not common

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Eyes

Nearly 50% of individuals with TSC have involvement of one or both eyes, but visual loss is uncommon. This may be higher as many individuals with TSC do not receive