What is the life expectancy of someone with tuberous sclerosis?

What Is the Normal Life Expectancy of an Individual with TSC? Most people with TSC will live a normal life span. There can be complications in some organs such as the kidneys, lungs, and brain that can lead to severe difficulties and even death if left untreated. Uncontrolled epilepsy can also be life-threatening.

How long do people live with tuberous sclerosis?

Patients with tuberous sclerosis complex (TSC) have a life expectancy of 31.2 years and a 5-fold increased standardized mortality rate, both of which were worsen in the late disease onset group associated with renal diseases.

Can tuberous sclerosis be fatal?

Depending on where the noncancerous growths (benign tumors), develop and their size, they can cause severe or life-threatening complications in people with tuberous sclerosis.

Can you live a normal life with tuberous sclerosis?

Prognosis. Many children born with tuberous sclerosis live full and productive lives. The condition must be treated appropriately through the years, but in most cases, outcomes are very positive with normal life expectancy.

Can tuberous sclerosis be cured?

There is no cure for tuberous sclerosis, but there is a range of treatments for many of the problems caused by the condition.

Tuber Sclerosis Complex: Life after Diagnosis

Is tubular sclerosis a disability?

You can apply for Social Security disability benefits with tuberous sclerosis. When the SSA considers your claim, the main determining factor will be the severity of your symptoms. You may also qualify for SSI if you have a dependent child who has TSC and you are in sufficient financial need.

Does tuberous sclerosis qualify for disability?

The Social Security Administration (SSA) doesn't have a dedicated disability listing for tuberous sclerosis. However, patients suffering from debilitating symptoms of their tuberous sclerosis may still qualify for benefit payments.

How does TSC affect the brain?

Certain tumors, called subependymal giant cell astrocytomas, or SEGAs, can grow in the brain of people with TSC and may block the flow of cerebrospinal fluid in the spaces (ventricles) in the brain. This blockage can lead to behavioral changes, nausea, headaches or a number of other symptoms.

How does tuberous sclerosis affect the heart?

Benign tumors are a common manifestation of tuberous sclerosis complex (TSC). Heart tumors that result from TSC are called cardiac rhabdomyomas. As their name suggests, rhabdomyomas are composed of tissue normally present in the heart (rhabdo), that grows in a disorganized mass (myoma).

How rare is tuberous sclerosis?

Tuberous sclerosis is a rare genetic disorder that affects 1 in 6,000 newborns in the United States. Approximately 40,000 to 80,000 people in the United States have tuberous sclerosis. The prevalence in Europe is estimated to be approximately 1 in 25,000 to 1 in 11,300.

Does tuberous sclerosis cause autism?

Tuberous sclerosis complex (TSC) is a rare genetic disorder with an incidence of 1:6000 live births and estimated prevalence of 50,000 individuals in the United States. An estimated 40-50 percent of individuals with TSC have autism spectrum disorder, making TSC a leading genetic cause of syndromic autism.

Does tuberous sclerosis affect kidneys?

Tumors, cysts, and other types of lesions of the kidney are common among people who have tuberous sclerosis complex (TSC). In fact, kidney problems are the third most common manifestation of the disorder, after brain and skin lesions.

How does someone get tuberous sclerosis?

Tuberous sclerosis is a genetic condition. That means it is caused a change in your genes, the elements that make your body. Sometimes, it can be passed down through a family. If one parent has it, every child born to that parent has up to a 50% chance of inheriting it, too.

Can tuberous sclerosis cause epilepsy?

Epilepsy is perhaps the most common medical condition of people with tuberous sclerosis complex (TSC). Although estimates vary, at least 60 percent and possibly more than 90 percent of people with the disorder experience epileptic seizures at some point in their life.

Is tuberous sclerosis inherited?

Tuberous sclerosis complex has an autosomal dominant pattern of inheritance, which means one copy of the altered gene in each cell is sufficient to increase the risk of developing tumors and other problems with development.

Can tuberous sclerosis be detected before birth?

In tuberous sclerosis, a cardiac rhabdomyoma is the only sign that can be detected prenatally by ultrasound. In maternal tuberous sclerosis, fetal ECHO can be advisable after 22 weeks.

Does tuberous sclerosis affect teeth?

Gingival fibromas and dental pitting are among the diagnostic criteria for tuberous sclerosis complex (TSC).

Is tuberous sclerosis an intellectual disability?

Background: Tuberous sclerosis complex (TSC) is associated with intellectual disability, but the risk pathways are poorly understood.

How do you remember tuberous sclerosis?

A potentially useful mnemonic for tuberous sclerosis is HAMARTOMAS: Hamartoma, Adenoma sebaceum, Mental retardation (now properly referred to as intellectual disability), Ash leaf spots, Rhabdomyoma, Tubers, Optic hamartomas (phakomas), Mitral regurgitation, Astrocytomas, Seizures.

What are the symptoms of tuberous sclerosis?

One of the earliest signs of tuberous sclerosis is white skin patches on a baby's body, called hypomelanotic macules. As the child gets older, he or she may develop other lesions such as a rash across the cheeks and nose, areas of thickened skin, and small bumps under the fingernails or toenails. Brain tumors.

What organs does tuberous sclerosis affect?

Tuberous sclerosis (also called tuberous sclerosis complex, or TSC) is a rare, multi-system genetic disease that causes non-cancerous (benign) tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin.

Who treats tuberous sclerosis complex?

Epilepsy Specialists for Seizure Management

If you or your child has seizures -- they occur in more than 80% of people with tuberous sclerosis -- epilepsy specialists called epileptologists will be involved in your care.