What is the treatment for tuberous sclerosis?

Not curable. The disease is managed by surgery for the tumors as applicable, and medications. No two cases are alike. Ask about sirolimus if this question applies to a family member. Patients who wish to become parents will do well to learn how to prevent transmission of the illness to their children. Best wishes.
Managed, not cured. Ts is a lifelong process whose treatment begins with recognition, education and monitoring through life. It can be quite mild with no long term effects, or be devastating.Related seizures & emergence of soft tissue "tubers" in the brain & major organs can create problems.Periodic ct scans & ultrasounds to monitor the organs are common.Coordinated efforts of local & specialty drs is a must.

Related Questions

What are some treatments for tuberous sclerosis?

Managed, not cured. Ts is a lifelong process whose treatment begins with recognition, education and monitoring through life. It can be quite mild with no long term effects, or be devastating.Related seizures & emergence of soft tissue "tubers" in the brain & major organs can create problems.Periodic ct scans & ultrasounds to monitor the organs are common.Coordinated efforts of local & specialty drs is a must. Read more...
Management. Surgery for the tumors that need to be removed. Medication for seizures. Sirolimus and rapamycin have some specificity for TS symptoms but are powerful and side effects. Read more...

Is there a cure for tuberous sclerosis?

No cure only help. Once a person has the ts gene they have its associated problems for life. They can acquire it from a parent or get it as a new mutation, but the mutation effects every cell in the body. It can be very mild. I knew a college grad who adopted rather than risk passing it & she just had a bit of skin findings. I have treated many who had the soft tumors come up in the brain, kidneys etc. With many pbs. Read more...
No. There will not be a cure for a long time; if it does happen, it will be gene therapy. The illness needs to be managed, and people who are affected need to be able to prevent passing it on to the next generation. Read more...

What are the tests for tuberous sclerosis?

Suspicion/ testing. A trained observer will often see the early skin changes of ts in early infancy. A ct scan and or other studies will often confirm the presence of "tubers", a soft fatty tissue growth that can show up in the brain and other organs. As these kids age, management is often focused on controlling seizures & monitoring the major organs for tuber emergence ( some could require removal). Read more...
Genetic mutations. Tuberous sclerosis complex is caused by mutations in the ts1 gene on chromosome 16 and the ts2 gene on chrosome 9.Only one of these has to be affected to have symptoms. Symptoms and their severity vary, even within a family. If a parent has tsc, each of his childen has a 50% chance of having it. Spontaneous mutations also occur. See http://www.Tsalliance.Org for comprehensive information. Read more...

What are the symptoms of tuberous sclerosis?

Early vs Late. This condition is often first suspected when several skin patches appear with diminished pigment in the shape of an ash leaf on arms, legs, trunk. Over time other skin & internal changes occur. Soft "tubers" or growths can show up in the brain or organs.The disease is quite variable.I know one normal mom who adopted rather than risk passing it (had some skin stuff) & many profoundly impaired. Read more...
TUBEROUS SCLEROSIS. Sx are mental retardation, epilepsy, learning disorder, behavioral problems and cardiac, renal, cranial manifestations.Cutaneous findings are shagreen patches, neurofibromatosis, cafe-au-lait spots and tumors. Read more...

What is tubular sclerosis (or tuberous sclerosis)?

Neurological disorde. Tuberous sclerosis is a disorder involving brain structure, skin manifestations and cognitive function. Brain malformations called tubers are characteristic. Skin abnormalities of sebaceous adenomas and subungual fibromas. See a neurologist for more information. Read more...

Can tuberous sclerosis be an auto immune disease?

No. Ts is a genetic disorder that often arises from a new mutation. There are a variety of skin findings that can point to the diagnosis.It is the finding or "tubers" that can arise in the brain and other organs that can produce the most impairment in quality of life. It can be so mild that a college grad doesn't know they have it, or disabling by late childhood. Read more...

Is there an association between molluscum pendulum and tuberous sclerosis?

Can be. Molluscum pedulum are listed as one of many skin findings in ts. Rare in early childhood they show up in as many as 20% of adults. Read more...

My daughter was diagnosed with tuberous sclerosis complex. Will all such children get tumors?

Variable process. These kids get tubors, fleshy benign growths that can show up in a lot of places like the brain, heart, kidney etc.Thought they do not spread like cancer, they can interfere with normal organ function & trigger seizures.Ts can be very mild, i knew one mom who found out after college & chose to adopt rather than risk passing it on. Regular tests, ultrasound or ct can help avoid surprise complications. Read more...