Tuberous Sclerosis Complex Global Awareness Day

The Tuberous Sclerosis Complex Global Awareness Day is the perfect time to learn about a disease that creates greater problems due to ignorance. 
Tuberous Sclerosis Complex Global Awareness Day

Last update: 25 August, 2021

Tuberous Sclerosis Complex (TSC) Global Awareness Day takes place every May 15. The TSC International is in charge of the event along with the TS Alliance and other organizations all over the world.

First, the importance of this day is about raising awareness about a disease that’s the main genetic cause of epilepsy and autism. Estimates indicate it afflicts one out of every six thousand people worldwide.

Here, we’ll explain what tuberous sclerosis complex is below as well as its causes, symptoms, treatments, and the call to global awareness and ways to participate in the event.

What is tuberous sclerosis complex?

This is a genetic disorder that results in the formation of non-cancerous tumors in vital organs. Moreover, the main organs affected by this anomaly are the heart, brain, eyes, kidneys, lungs, and skin.

As mentioned above, the tuberous sclerosis complex is also the main genetic cause of autism and epilepsy. However, there’s still a great deal of ignorance about it despite its prevalence as cystic fibrosis and the fact that it affects approximately one million people worldwide.

Causes and symptoms

First, one of the basic reasons for TSC Global Awareness Day is to provide accurate information about the causes of the disease. Additionally, two factors lead to this condition:

  1. Random error in cell division, that is a mutation in the TSC1 or TSC2 genes
  2. Hereditary when there’s a genetic transfer of the mutation in the TSC1 or TSC2 gene

Furthermore, the various symptoms that manifest in patients with tuberous sclerosis complex are:

  • Spots, thickening, or bumps on the skin
  • Seizures resulting from brain tumors
  • Delays in cognitive development
  • Heart disorders
  • Shortness of breath during simple physical activities
  • White spots in the eyes
A person having a seizure.
Tuberous sclerosis complex is a genetic cause of epilepsy.

Diagnosis and treatment

The diagnosis of a patient with a tuberous sclerosis complex is a long process. This is because it requires a neurologist, a cardiologist, an ophthalmologist, a dermatologist, a nephrologist, and a psychologist, among others.

Likewise, it requires studies like an electroencephalogram, magnetic resonance imaging, tomography, ultrasound, echocardiogram, and ocular evaluation, just to name a few.

In turn, treatment aims to control the disease as there’s no cure. In this respect, it requires different solutions because it impairs many body functions:

  • Medications like anticonvulsants and others focused on cardiac alterations
  • Surgery for the removal of tumors that prevent the normal functioning of certain organs
  • Psychiatric therapy to facilitate the management of emotions and social interaction
  • Others like physiotherapy, speech therapy, and occupational therapy, among others

The importance of tuberous sclerosis complex awareness

The World Tuberous Sclerosis Awareness Day celebrates its ninth edition in 2021. Overall, its objectives are to raise awareness and support all patients. In addition, it seeks to strengthen the links between organizations around the world to improve synergy.

The intention is to improve the quality of life of patients while making every effort to find a cure. The health systems and the population need to be aware of the delicate pathology to achieve it.

Also, another important point of advancing awareness and treatment of tuberous sclerosis is it could be positive in the struggle against autism, epilepsy, and cancer.

Activities

Overall, the activities renew every year to better reach people and meet the goals. Some of the most interesting ones are:

  • Project #IAMTSC. Tuberous Sclerosis Complex Global Awareness Day information campaign to convey the preponderance of research to the environment, as well as experiences of those affected
  • Global Virtual Walk, Run and Ride to Cure Tuberous Sclerosis is a 5K-10K walk (or run) initiative to raise $700,000
  • Virtual lectures around the world with a small registration fee that’ll go towards research for a definitive treatment
A person doing a speech.
The talks and conferences on the disease this year will be virtual.

How to actively participate

Overall, we recommend some of the main options to be part of this awareness day:

  • Contacting local organizations to acquire relevant information about this year’s campaign
  • Also, download and share the official flyers on social media, using the hashtags #TSCglobalday and #United4TSC
  • Demand that those in government-issue an official proclamation using the template provided by TSC International
  • Also, write and share messages of encouragement on social media to those affected with the hashtags #TSCglobalday #makingTSCmatter and #becauseTSCmatters
  • Share the messages pre-established by international organizations for the days of May on Twitter

Final thoughts on Tuberous Sclerosis Complex Global Awareness Day

Finally, the best way for the tuberous sclerosis complex to receive the importance it deserves and try to find a cure is based on the unity of all health sectors. Furthermore, integrating patients into society enhances their quality of life.

As a final consideration, early diagnosis allows medical personnel to refine treatment to make the disease more bearable. Thus, Tuberous Sclerosis Complex Global Awareness Day remains a pillar of progress.

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