Tuberous Sclerosis Complex (TSC)

Managing TSC requires coordinated and consistent support. 

A lifelong genetic disorder often diagnosed in infancy or childhood, TSC can affect multiple organ systems—including the brain, kidneys, skin, heart, and lungs—and commonly involves neurologic complications, particularly seizures. Managing TSC requires coordinated care across specialities and consistent therapy to control symptoms and support quality of life. 

Total Care RX works closely with patients and providers to simplify access to FDA-approved therapies used to treat TSC manifestations, including:

  • Anti-seizure medications are used to manage infantile spasms and refractory seizures
  • mTOR inhibitors for tumors, seizure control, and organ-related complications
  • Topical treatments for skin manifestations, such as facial angiofibromas
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hyftor

Featured Therapy: HYFTOR (sirolimus topical gel 0.2%)

For TSC patients aged 6 years and older, HYFTOR is the only FDA-approved topical treatment for facial angiofibromas.

Total Care RX is one of two national specialty pharmacies that support patient access to HYFTOR, helping to streamline therapy initiation and ongoing treatment. HYFTOR, developed by Nobelpharma America (NPA), acts by targeting the mTOR pathway involved in TSC-related skin manifestations. 

Contact us to learn more.

Proactive Care Coordination for TSC Patients 

Our specialty pharmacy services extend beyond traditional dispensing. Total Care RX helps ensure patients receive timely and consistent access to treatment through:

  • Personalized guidance for patients and caregivers 
  • Proactive refill monitoring to maintain therapy continuity
  • Medication synchronization to promote adherence in an effort to maximize treatment effectiveness
  • Coordination with providers to reduce administrative burden and streamline care
By integrating into the broader care plan, Total Care RX is a trusted partner for patients and families navigating complex neurologic and rare disease conditions, including Tuberous Sclerosis Complex. Our proactive approach enables us to deliver both reliable access to critical therapies and better outcomes.
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Support Helps The Healing Process

Total Care RX strongly believes that support groups help bring people together and provide common ground for those suffering from similar medical conditions. Sharing experiences, feelings, and coping strategies can be a major part of the healing process.

Almost 40 Years of Personal & Specialized Patient Care

Total Care RX feels strongly that exceptional patient care goes beyond the prescription.  Patients require the proper education to fully understand and get the most benefit from their medications. This is what being a specialty pharmacist means to us.

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