There's no cure for tuberous sclerosis, but treatment can help manage specific signs and symptoms. For example:
- Medication. Anti-epileptic drugs may be prescribed to control seizures, and other medications may help manage behavior problems. A medication called everolimus (Afinitor, Zortress) may be used to treat certain types of brain growths and kidney tumors that can't be surgically removed in people with tuberous sclerosis. The topical ointment form of a drug called sirolimus may help treat acne-like skin lesions that can occur in tuberous sclerosis.
- Educational therapy. Early intervention can help children make adaptations to developmental delays and meet their full potential in the classroom.
- Occupational therapy. Through occupational therapy, a person who has tuberous sclerosis can improve his or her ability to handle daily tasks.
- Psychological therapy. Talking with a mental health therapist may help you or your child accept and adjust to living with this disorder.
- Surgery. If a lesion affects the ability of a specific organ — such as the kidney or heart — to function, the lesion may be surgically removed. Sometimes surgery helps control seizures caused by brain lesions that don't respond to medication. Surgical procedures such as dermabrasion or laser treatment may improve the appearance of skin lesions.
Tuberous sclerosis is a lifelong condition that requires careful monitoring and follow-up because many signs and symptoms may take years to develop. With appropriate care, however, many people who have tuberous sclerosis lead full, productive lives and enjoy a normal life expectancy.
Nov. 25, 2014
- Babovic-Vuksanovic D (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 28, 2014.
- Tuberous sclerosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm. Accessed Sept. 23, 2014.
- Tuberous sclerosis complex. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/tuberous-sclerosis-complex. Accessed Sept. 23, 2014.
- Tuberous sclerosis. National Organization for Rare Disorders. https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/35/viewFullReport. Accessed Sept. 23, 2014.
- Owens J, et al. Tuberous sclerosis complex: Genetics, clinical features, and diagnosis. http://www.uptodate.com/home. Accessed Sept. 23, 2014.
- Owens J, et al. Tuberous sclerosis complex: Management. http://www.uptodate.com/home. Accessed Sept. 23, 2014.
- Krueger DA, et al. Tuberous sclerosis complex surveillance and management: Recommendation of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatric Neurology. 2013;49:255.
- About TSA. Tuberous Sclerosis Alliance. http://www.tsalliance.org/. Accessed Sept. 30, 2014.
- Hand JL (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 4, 2014.