Tuberous Sclerosis Complex Global Day Of Consciousness
Tuberous Sclerosis Complex (TSC) Global Awareness Day takes place every 15 May. TSC International is responsible for the event together with TS Alliance and other organizations around the world.
First, the importance of this day is about raising awareness about a disease that is the leading genetic cause of epilepsy and autism. Estimates indicate that it affects one in every six thousand people worldwide.
Here we will explain what tuberous sclerosis complex is below, as well as the causes, symptoms, treatments and the call for 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. Furthermore, the main organs affected by this anomaly are the heart, brain, eyes, kidneys, lungs and skin.
As mentioned above, tuberous sclerosis complex is also the leading genetic cause of autism and epilepsy. However, there is still a lot of ignorance about it despite its prevalence as cystic fibrosis and the fact that it affects about one million people worldwide.
Causes and symptoms
First, one of the fundamental causes of TSC Global Awareness Day is to provide accurate information about the causes of the disease. In addition, two factors lead to this condition:
- Random error in cell division, ie a mutation in the TSC1 or TSC2 genes
- Hereditary when there is a genetic transmission of the mutation in the TSC1 or TSC2 gene
Furthermore, the various symptoms that manifest in patients with tuberous sclerosis complex are:
- Stains, thickening or lumps on the skin
- Seizures caused by brain tumors
- Delays in cognitive development
- Heart disease
- Shortness of breath during simple physical activities
- White spots on the eyes
Diagnosis and treatment
The diagnosis of a patient with tuberous sclerosis complex is a long process. This is because it requires, among other things, a neurologist, a cardiologist, an ophthalmologist, a dermatologist, a nephrologist and a psychologist.
Similarly, it requires studies such as an electroencephalogram, magnetic resonance imaging, tomography, ultrasound, echocardiogram and ocular evaluation, just to name a few.
In turn, the treatment aims to control the disease, as there is no cure. In this regard , it requires different solutions because it impairs many bodily functions:
- Medications such as anticonvulsants and others focused on heart changes
- Tumor removal surgery that prevents normal functioning of certain organs
- Psychiatric therapy to facilitate the management of emotions and social interaction
- Others like physiotherapy, speech therapy and occupational therapy
The importance of tuberous sclerosis-complex consciousness
World Tuberous Sclerosis Complexity Awareness Day celebrates its ninth edition in 2021. Overall, the goals are to raise awareness and support all patients. In addition, it seeks to strengthen the links between organizations around the world to improve collaboration.
The intention is to improve the quality of life of patients while we do everything to find a cure. Health systems and the population must be aware of the delicate pathology to achieve this.
Another important point to raise awareness and treatment of tuberous sclerosis is that it can be positive in the fight against autism, epilepsy and cancer.
Activities
In total, the activities are renewed every year to better reach people and reach the goals. Some of the most interesting are :
- Project #IAMTSC. Information campaign for tuberous sclerosis complex global awareness day to disseminate research to the environment, as well as experiences from 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 goes to research for a final treatment
How to participate actively
Overall, we recommend some of the main options to be a part of this awareness day:
- Contact local organizations for relevant information about this year’s campaign
- Download and share the official flyers on social media using the hashtags #TSCglobalday and # United4TSC
- Require the government to issue an official proclamation using the template provided by TSC International
- Also write and share encouragement messages on social media to those affected by the hashtags #TSCglobalday #makingTSCmatter and #becauseTSCmatters
- Share the messages pre-created by international May Day organizations on Twitter
Concluding Thoughts on Tuberous Sclerosis Complex Global Consciousness Day
Finally, the best way for a tuberous sclerosis complex is to receive the importance it deserves and try to find a cure based on collaboration in all health sectors. Furthermore , the integration of patients into society improves the quality of life.
As a final assessment, early diagnosis allows medical personnel to refine treatment to make the disease more bearable. Thus, tuberculous sclerosis complex Global Consciousness Day remains a pillar of progress.
