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Tuberous Sclerosis 5 Cn229769

Published: July 22, 2026Updated: August 20, 2026

A genetic disorder in the tuberous sclerosis group. May cause skin lesions, brain growths, or kidney issues. Regular imaging and specialist care help manage health.

Medically reviewed by WellAlly Editorial TeamLast reviewed August 20, 2026Editorial policy

Key facts at a glance

ICD-10
G40.909
ICD-11
8A00.0
Body system
neurologic
Severity
moderate
Chronic
true

Signs and symptoms

Common signs and symptoms that may indicate this condition.

Warning signs - seek immediate care

!

Status epilepticus

Epilepsy

(neurologic)

Generalized symptoms

(neurologic)

Noticeable symptoms that may vary in intensity over time.

Frequency: Common at all stages

Behavioral problems

(neurologic)

Subependymal nodules

(neurologic)

Diagnosis and tests

How this condition is diagnosed and what test results mean.

Initial screening tests

1

Standard diagnostic workup

Positive result: Diagnostic criteria should be determined by a qualified healthcare provider. [Content pending medical review.]

Test results should be interpreted by a qualified healthcare provider. [Content pending medical review.]

Treatment options

Evidence-based approaches to managing this condition.

First-line treatments

1

Behavioral and nutritional therapy

Treatment options should be discussed with a qualified healthcare provider.

lifestyle
2

mTOR Inhibitor Therapy

First-line systemic therapy using mTOR inhibitors to control tumor growth across affected organ systems, particularly renal and neurological involvement in this tuberous sclerosis variant.

medication
3

Antiepileptic Drug Management

Comprehensive seizure management using appropriately selected anticonvulsants based on seizure classification and tolerability profile for long-term control.

medication

Additional treatment options

Renal Tumor Embolization

Minimally invasive catheter-based embolization of enlarging renal angiomyolipomas to prevent hemorrhage while preserving kidney function in patients with significant renal involvement.

surgical

Renal Function Surveillance

Regular monitoring of kidney function through estimated glomerular filtration rate, urinalysis, and periodic imaging to detect and manage renal involvement progression.

monitoring

Ketogenic Diet Support

Medically supervised ketogenic or modified Atkins diet for patients with refractory seizures, which may provide neuroprotective effects through metabolic mechanisms.

dietary

When to seek medical help

Recognize when you need immediate medical attention.

Schedule an appointment soon

Symptoms associated with this condition. Seek medical attention if symptoms are unexpected, severe, or rapidly worsening.- Contact your healthcare provider if symptoms persist or worsen. Seek emergency care for sudden severe symptoms.

Frequently asked questions

Common questions about this topic.

Q

What is Tuberous Sclerosis 5 Cn229769?

Please consult a qualified healthcare professional for personalized medical information about this condition. [Content pending medical review.]

general

Sources and references

Authoritative medical sources used to create this content.

1

Northrup H, Koenig MK, Au KS. Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatr Neurol. 2020.

guideline2020
2

Henske EP, Jozwiak S, Kingswood JC, Sampson JR, Thiele EA. Tuberous sclerosis complex. Nat Rev Dis Primers. 2023.

review2023
3

Curatolo P, Bjornvold M, Dilla PT, Galebski P, Voi M. Efficacy and Safety of mTOR Inhibitors for the Treatment of Tuberous Sclerosis Complex: Results from a Phase III Randomized Controlled Trial. Neurology. 2021.

clinical_trial2021
4

Wang MY, Zou J, Chen Y, Lu JF, Xu L. Management of Renal Angiomyolipoma in Tuberous Sclerosis Complex: A Systematic Review and Meta-Analysis. Urologia Internationalis. 2022.

meta_analysis2022

Medication Comparisons

Compare medications used to treat Tuberous Sclerosis 5 Cn229769. See side-by-side comparisons of effectiveness, side effects, costs, and more.

View Medication Comparisons

This information is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

Medical Disclaimer

This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the guidance of a qualified healthcare provider with any questions you have about a medical condition, and never disregard professional medical advice or delay seeking it because of something you read here.

If you think you may have a medical emergency, call your local emergency number or go to the nearest emergency department immediately.

Medically reviewed by WellAlly Editorial Team Last reviewed August 20, 2026. · Read our editorial policy