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National Tuberous Sclerosis Awareness Month – May 2023

National Tuberous Sclerosis Awareness Month is observed throughout May. The month is set aside to increase awareness about tuberous sclerosis, a rare genetic disorder. The month recognizes the suffering of people who are living with this disorder. It also aims to counteract the social exclusion and stigmatization that they face. During this month, organizations and individuals have an opportunity to extend their support to people suffering from tuberous sclerosis through funding research towards easing symptoms of the disease and empowering healthcare providers, educators, and families of people living with the disorder, as well as other caregivers.

History of National Tuberous Sclerosis Awareness Month

Tuberous sclerosis, also known as Tuberous Sclerosis Complex (T.S.C.) or Bourneville-Pringle disease, is a rare genetic disease. It belongs to the group of so-called neurocutaneous disorders.

Tuberous sclerosis happens due to mutation in the TSC1 or TSC2 genes. These genes involved in cell growth lead to excessive growth and multiple tumors in the body.

The Tuberous Sclerosis Complex are non-cancerous ‘benign’ tumors that grow in different parts of the body. The organs most often affected by these tumors are the brain, skin, kidneys, heart, eyes, and lungs. Tuberous sclerosis is present from birth, although it may not cause problems immediately. One in 6,000 people globally is born with such a mutation.

Only one parent needs to have the faulty gene to pass it on to their child. A parent who has one of the faulty genes has a 50% chance of passing it on to each child they have. The parent carrying the faulty gene will also have the disease, although it may be so mild they do not realize it.

T.S.C. can have many different manifestations. Treatment of tuberous sclerosis complex is focused on managing symptoms and is symptom-specific. For example, T.S.C. patients with epilepsy are treated with drugs and approaches commonly used to treat childhood epilepsy.

Another example is the drug Rapamycin and its derivatives (such as everolimus), also known as ‘mTOR inhibitors,’ being sometimes used to treat tumors and/or epilepsy caused by tuberous sclerosis complex. Thankfully, advances in science and medicine, better treatment, proper care, and public awareness of the serious problems patients face all contribute to a significant improvement in their lives.

Tuberous sclerosis is often a huge trauma not only for patients due to social reactions but also for their families. National Tuberous Sclerosis Awareness Month is a time to stand in solidarity with people with T.S.C and their caregivers.

National Tuberous Sclerosis Awareness Month timeline

1800s
Medical Community Recognizes the Condition

The medical community introduces T.S.C. with the description of a characteristic facial rash.

1880
Désiré-Magloire Advances T.S.C. Research

A French Neurologist identifies hard swellings in his patients’ brains as tuberous sclerosis.

1980s
Tuberous Sclerosis Complex International is Organized

A group of international organizations collaborates to share information about managing T.S.C.

1990s
The Genetic Loci of Tuberous Sclerosis

Identification of the tuberin and hamartin, which suppress tumor growth happens.

National Tuberous Sclerosis Awareness Month FAQs

When is World Tuberous Sclerosis Day?

World Tuberous Sclerosis Day is observed on May 15.

Is Tuberous Sclerosis fatal?

Many people with T.S.C. will have a normal lifespan, although several life-threatening complications can develop.

How many people on earth have T.S.C.?

T.S.C. affects an estimated one million people worldwide.

How to Observe National Tuberous Sclerosis Awareness Month

  1. Spread the word

    Tuberous sclerosis is a disease that not many people know about. In honor of this month, share information about T.S.C. and among your community. You can also work with your community leaders to organize awareness drives.

  2. Be a volunteer

    Numerous organizations are working to support tuberous sclerosis patients. If there is a T.S.C. organization in your area, find out if you can volunteer.

  3. Give financial support

    Organizations such as the Tuberous Sclerosis Association are involved in research to make the lives of patients easier. Donating to such bodies will help them go further with this noble cause.

5 Interesting Facts About Tuberous Sclerosis

  1. T.S.C. has no cure

    As with many genetic disorders, tuberous sclerosis treatment involves managing symptoms.

  2. Tuberous sclerosis leads to mental disorders

    90% of T.S.C. patients end up developing A.D.H.D., anxiety, autism, or depression.

  3. Doesn’t always run in the family

    Approximately two-thirds of individuals diagnosed with T.S.C. have no family history of the condition.

  4. It varies among individuals

    The tuberous sclerosis complex affects everyone uniquely, even identical twins.

  5. Link to epilepsy and autism

    T.S.C. is the leading genetic cause of epilepsy and autism spectrum disorders.

Why National Tuberous Sclerosis Awareness Month is Important

  1. It shows compassion for patients

    The difficulties of living with tuberous sclerosis are severe and isolating. This important month is a perfect opportunity to show our support for T.S.C. patients.

  2. It supports caregivers

    Healthcare workers and families of people with T.S.C. have a lot on their plate as caregivers. National Tuberous Sclerosis Awareness Month shows our support for all those who take care of people with T.S.C.

  3. It creates awareness

    More people need to know about this rare health condition. Awareness creates more empathy for T.S.C. patients and makes their lives more comfortable.

National Tuberous Sclerosis Awareness Month dates

YearDateDay
2023May 1Monday
2024May 1Wednesday
2025May 1Thursday
2026May 1Friday
2027May 1Saturday
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