Patient discussions
Patients with TSC should be helped to become familiar with how the disease affects them. Their unique circumstance can be followed in conjunction with a professional knowledgeable about TSC. Each patient should be familiar with the suggested follow-up care and monitoring guidelines available.
A fundamental understanding of the genetic inheritance of TSC and the clinical variability it imposes are important.
Patients should be encouraged to take advantage of the wide availability of both printed and electronic educational material, and to attend one of the many sponsored family conferences to enhance understanding and keep abreast of current knowledge and treatments.
A rich support network exists for patients and families with TSC. Regionally located specialty clinics offer expertise in the diagnosis and management of the disease. The Tuberous Sclerosis Alliance is a dedicated organization providing patient and family educational materials, coordinated sponsorship of basic and clinical research, and organized legislative advocacy. Tuberous Sclerosis Alliance Opens in new window These activities hold promise to identify meaningful therapies and interventions for those with TSC.[3][86][87]
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