Tuberous sclerosis complex (TSC) care

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Tuberous sclerosis complex (TSC) is a genetic disease that can cause noncancerous tumors to grow in many different parts of the body, such as the skin, brain, kidneys, or other organs.

Some of the possible symptoms of TSC include intellectual disabilities or serious health problems, depending on where the tumors grow.

TSC is a lifelong condition, and its signs and symptoms vary from person to person and can change frequently. That’s why all people with TSC should have a long-term care plan that addresses their unique and changing needs during childhood and into adulthood.

Your care team in the TSC clinic at UI Stead Family Children’s Hospital includes physicians who specialize in all of the many areas of care required by TSC patients, including patients with serious or complex cases.

Our services also include genetic counseling and a dedicated program to help guide patients as they transition from pediatric care to adult care.

Tuberous sclerosis symptoms and diagnosis

TSC is a genetic disease. It’s usually inherited from a parent, although it’s also possible to be the first person in the family to have the condition.

Many people find out they have TSC after having seizures. Others may have birthmarks on their skin. Sometimes TSC is diagnosed before birth when a prenatal ultrasound discovers masses in the heart.

TSC can show up in many different places in the body and can cause many different kinds of health problems that require many different kinds of care.

Tuberous sclerosis treatment

UI Stead Family Children’s Hospital provides expert care for TSC patients, no matter where in the body the symptoms occur and no matter how minor or serious those symptoms are.

And because TSC’s signs and symptoms can change as a patient ages, our treatment plans include a schedule of periodic follow-up visits to take care of any new problems as they arise.

When TSC patients at UI Stead Family Children’s Hospital reach adulthood, we provide full support for their transition to the care they’ll need from the UI Health Care specialists who treat adults with TSC.

We provide coordinated, expert care so that people who have TSC can lead their healthiest life possible, with one place to go for all of their health and medical concerns.

Comprehensive TSC care

The UI Stead Family Children’s Hospital TSC clinic offers:

  • Care from the only TSC clinic in the state of Iowa recognized by the TSC Alliance
  • Epilepsy care from neurologists at Iowa’s only epilepsy center to be designated as a Level 4 epilepsy center by the National Association of Epilepsy Centers
  • Expert pediatric kidney care and the only pediatric kidney transplant program in the state
  • Skin care from a dermatologist who specializes in treating children and young adults
  • A genetic counselor and a board-certified pediatric medical geneticist to assist with diagnosis and help families determine whether other family members might be at risk for TSC
  • Specialty care from experts in cardiology, dentistry, developmental and behavioral pediatrics, endocrinology, gastroenterology, gynecology, hematology-oncology, neuropsychology, neurosurgery, ophthalmology, orthopedics, psychology, pulmonology, radiology, urology, and more. 

Resources

Locations and Contact

  • UI Stead Family Children's Hospital
    2400 Colloton Pavilion
    200 Hawkins Drive
    Iowa City, Iowa 52242
    In House Directions: UI Stead Family Children's Hospital public elevator, Level 2
    Hours
    • Monday through Friday: 8 a.m. to 5 p.m.
    Contact
    • 1-319-356-4864 (Clinic Contact)
    • 1-855-543-2884 (855 KID AT UI)
    • 1-319-356-1616 (Emergency)

Other Team Members

Tuberous sclerosis providers without profiles

  • Kyle Dillahunt, genetic counselor
  • Liberty Taeger, TSC clinic coordinator
  • Benjamin Renking, MD, cardiologist
  • Matthew Geneser, DDS. dentist
  • Rachel Dyke, pharmacist
  • Marcia Gilbert, social worker
  • Rachel Beiler-Funmilayo, nephrology dietician