Tuberous Sclerosis Complex
New tuberous sclerosis complex research, summarized each month in plain language.
2026 so far: So far in 2026, real-world reports linked mTOR inhibitors to fewer kidney bleeds and tumor shrinkage, but also described rebound after stopping; epilepsy add-ons and procedures showed mixed results. Read the 2026 review
We also cover clinical trials.
Yearly update
2026 so far
- mTOR inhibitors over time. Kidney benefits were reported more often, and rebound after stopping was described more clearly.
- Add-on seizure medicines. More real-world add-on data helped set expectations for seizure control and side effects.
- Devices and surgery. Procedure reports highlighted careful selection, repeat operations, and outcomes beyond seizures.
- Daily life and TAND. Reports linked seizures and behavior challenges with stress and sleep difficulties.
- Organ and seizure monitoring. More work focused on finding risks that can be missed without specific tests.
New
September 2026
- CBD add-on therapy. Seizures often fell, but side effects were commonly reported.
- Everolimus add-on. Some people had fewer seizures with longer follow-up.
- Seizure procedures. Laser treatment and open surgery had similar seizure control.
August 2026
- Kidney tumor size. Everolimus was linked to smaller angiomyolipomas, with rebound after stopping.
- Seizure relapse. After early vigabatrin response, seizures often returned months later.
- Repeat surgery outcomes. Seizure freedom was reported more often after first surgery than repeats.
- Prenatal heart tumors. More than one fetal heart tumor raised TSC likelihood more than size.
July 2026
- Seizure device support. Vagus nerve stimulation plus medicines linked to better seizure control.
- Childhood seizure course. Hard-to-control childhood seizures linked to later adult disability.
- Kidney complication risk. Kidney bleeding and decline were more common with age and lesion burden.
- TSC2 test clarity. Deeper testing clarified some previously unclear TSC2 results.
June 2026
- LAM lung tracking. In LAM, sirolimus use was linked to stable lung function.
- Kidney bleed risk. Imaging features helped estimate angiomyolipoma bleeding (rupture) risk.
- Mood and learning. Attention and language problems were common, especially with TSC2.
- Cross-organ testing. Imaging and genetic testing helped confirm TSC when scans were limited.
May 2026
- Seizures without visible signs. In infants with definite TSC, EEG (a brain-wave test) often detected seizures that were not obvious from outward behavior.
- Changing seizure start areas. In children evaluated for epilepsy surgery, the seizure starting area on EEG often changed over time or involved more than one brain region.
- Add-on cannabidiol (CBD). Across trials in drug-resistant epilepsy (including TSC), add-on CBD reduced seizures on average but still required monitoring for side effects.
- Autism prediction research. A small exploratory study suggested that combining certain brain MRI measures with behavior testing around age 2 might help predict autism at age 3, but this is not yet proven.
April 2026
- Kidney bleeding risk. Starting an mTOR inhibitor was linked to fewer kidney angiomyolipoma bleeding events in routine-care data.
- Seizure response. In a retrospective childhood epilepsy report, adding sirolimus or everolimus was linked to higher seizure-response rates.
- Additional gene findings. Some people had extra genetic findings beyond TSC1/TSC2 that could affect how symptoms are interpreted.
- More detailed imaging. Specialized eye and brain scans reported changes that were not seen on standard imaging.
March 2026
- Infant EEG patterns. In an infant study, starting vigabatrin early was linked to fewer EEGs showing certain abnormal background patterns between seizures.
- CT vs routine MRI. In one imaging study, CT and routine MRI each detected different types of brain changes in TSC.
- Mosaic TSC testing. In mosaic TSC, a genetic change may be found in tissue even when blood genetic testing is negative.
- Parent stress drivers. In parents of preschoolers with TSC, higher stress tracked with behavior challenges, lower daily skills, seizure severity, and medical-related costs.
February 2026
- Add-on cenobamate for seizures. In young adults with drug-resistant TSC epilepsy, add-on cenobamate was linked with fewer seizures in many reports, with the largest reported changes in daily functioning and quality of life.
- mTOR inhibitors and tumor size. Selected reports linked sirolimus or everolimus with shrinkage of some TSC-related heart tumors, while questions remained about prenatal timing and how long treatment should continue.
- Finding early seizures. In newborns, long video-EEG detected seizures that were not obvious on exam, and imaging-based computer models were also reported to help predict seizure outcomes in specific settings.
- Making TSC2 results clearer. Laboratory approaches were used to reclassify many uncertain TSC2 variants into more informative categories, with the goal of making genetic results less ambiguous over time.
January 2026
- Kidney problems. Angiomyolipomas were linked to bleeding, anemia, and pain.
- Everolimus and kidneys. Kidney function stayed about the same; more shrinkage linked to improvement.
- Seizure surgery options. In a mixed epilepsy review, open surgery had numerically higher seizure-freedom rates, without a statistically significant overall difference; laser treatment had fewer complications.
- Vomiting as a sign. Vomiting sometimes signaled seizures in children with TSC.
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