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.
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How serious is tuberous sclerosis?

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.
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Is tuberous sclerosis complex rare?

Tuberous sclerosis, also known as tuberous sclerosis complex, is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs.
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How long can you 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.
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How many people get tuberous sclerosis each year?

Tuberous sclerosis complex affects 1 in 6,000 to 10,000 people.
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Tuberous Sclerosis Complex (TSC)



How common is tubular 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.
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Is TSC life-threatening?

All individuals with TSC are at risk for life-threatening conditions related to the brain tumors, kidney lesions, or LAM. Continued monitoring by a physician experienced with TSC is important. With appropriate medical care, most individuals with the disorder can look forward to normal life expectancy.
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Is TSC a 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.
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How many babies are born with tuberous sclerosis?

Tuberous sclerosis occurs in about one in 6,000 births. It affects all ethnic groups and both genders equally.
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How many people have TSC in the world?

How common is TSC? It is estimated that about 1 in 6,000 people has TSC, and there are about 1 million people with TSC in the world. As many as 60% of people with TSC do not have any family history of the condition; they have a de novo (new) mutation in the TSC1 or TSC2 gene.
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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.
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How do u 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.
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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.
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Can tuberous sclerosis be cured?

Although there is no cure for tuberous sclerosis, treatment can help manage specific symptoms. For example: Medication. Anti-seizure medications may be prescribed to control seizures.
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How do you test for tubular sclerosis?

Tests for tuberous sclerosis

an eye examination – to check for eye tumours. a skin examination – to look for abnormal growths or patches of pale or thickened skin. an MRI scan – to detect tumours in the brain or kidneys. a CT scan or ultrasound scan – to detect tumours in the kidneys, heart or lungs.
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How many people in the US have TSC?

TSC affects nearly 50,000 people in the United States and more than one million people worldwide. At least two children born each day will have TSC. Current estimates place TSC-affected births at one in 6,000.
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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.
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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).
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How many people have TSC in UK?

TSC is thought to affect about 1 in 7,000 people. This means that there are approximately 8,000 affected people in the UK alone.
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Is tuberous sclerosis an intellectual disability?

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

Pathophysiology. Tuberous sclerosis is a genetic disease that may affect almost every organ system. It involves mutations in genes (TSC1 and TSC2) that are responsible for the production of proteins that regulate cell division and growth in the body.
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What is syndromic autism?

The traditional definition of syndromic ASD is a disorder with a clinically defined pattern of somatic abnormalities and a neurobehavioral phenotype that may include ASD. Most have a known genetic cause. Examples include fragile X syndrome and tuberous sclerosis complex.
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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.
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Does tuberous sclerosis affect teeth?

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

Antiepileptic medications can help treat and control infantile spasms and other types of seizures associated with TSC. Laser surgery and topical creams can reduce the appearance of some of the skin lesions associated with TSC. This is especially true for facial lesions.
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