National Tuberous Sclerosis Day 2023: National Tuberous Sclerosis Day is annually observed on May 15. This day is dedicated to bringing attention to Tuberous Sclerosis Complex (TSC). People diagnosed with T.S.C. or Bourneville-Pringle disease are frequently marginalised in society due to the disease’s rarity. But Tuberous Sclerosis International’s proactive public service efforts are assisting to eradicate the stigma associated with the disease. This national holiday seeks to combat social exclusion related to the T.S.C. and raise funds for medical research. It is of the uttermost importance to recognise that people with TSC are not disabled and have the same right to education and social activities as everyone else.
HISTORY OF NATIONAL TUBEROUS SCLEROSIS DAY
On the basis of pathological observations and clinical investigations, T.S.C. has existed for approximately 160 years, despite the general public’s ignorance. P.F.O. Rayer’s colour plate illustration of an individual with facial angiofibroma (benign tumours) brought the T.S.C. to the attention of the public for the first time. Later, the German pathologist Friedrich Daniel von Recklinghausen submitted a report on the death of a newborn infant caused by cardiac myomas (benign heart tumours) and cerebral sclerosis (Schilder’s disease). In 1880, however, French neurologist D.M. Bourneville diagnosed a patient with tuberous sclerosis based on the patient’s mental subnormality, hemiplegia, and epilepsy attacks.
At the beginning of the 20th century, more T.S.C. findings were reported as a result of a combination of increased research and advanced technology. In conjunction with dermal, renal, cerebral, and cardiac lesions consistent with facial angiofibromas and epilepsy, a clearer picture of the disease’s clinical manifestations was then observed.
Today, significantly more sophisticated advances in research have made T.S.C. a more manageable disease. Understanding how brain lesions are formed in patients, whether they are inherited, pathophysiological, or neuropathological, requires that scientists identify T.S.C. gene mutations. The diagnostic criteria for the disease can now diagnose the severity of the disease for each individual patient. A broad variety of treatments are currently available, which has nearly eliminated the option of undergoing tumour surgery.
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HOW TO OBSERVE NATIONAL TUBEROUS SCLEROSIS DAY
Support TSC Day of Global Awareness
The purpose of this national holiday is to increase awareness of T.S.C. patients and eliminate the stigma associated with the disease worldwide. By supporting National Tuberous Sclerosis Day and T.S.C. Global Awareness Day, you make a modest contribution that has a significant impact.
Contact the T.S.C. organisation in your area.
On May 15 each year, T.S.C. organisations host local festivities and campaigns. Contact your local T.S.C. organisation for information on how to participate in parades, conferences, and fundraising events.
Utilise social media
Social media platforms are effective awareness-raising instruments for specific causes. On May 15, download the T.S.C. Global Awareness Day colouring flyers from T.S.C.
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5 IMPORTANT FACTS ABOUT TUBEROUS SCLEROSIS
TSC is caused by a genetic mutation
An abnormal gene causes T.S.C.
Tuberous sclerosis is not necessarily inherited.
In several instances, the infant is the first member of the family to carry the abnormal gene.
As widespread as ALS and cystic fibrosis
One in 6,000 births is affected by tuberous sclerosis, and two-thirds of affected infants have no familial history of the disease.
T.S.C. is currently incurable
Seizures, migraines, and other symptoms can be managed with medication, but there is no known cure for the disease.
T.S.C. has no treatment for prevention.
Because TSC is a genetic disorder, it cannot be prevented.
WHY NATIONAL TUBEROUS SCLEROSIS DAY IS IMPORTANT
It encourages research fundraising
National Tuberous Sclerosis Day is observed by organisations that raise awareness and organise fundraising activities. Proceeds from the events are used to develop programmes and resource information to aid medical professionals and scientists in their quest to discover a cure for the disease.
The day enables T.S.C. patients to be seen.
This national holiday gives people with T.S.C. the opportunity to be seen and heard. Many support organisations provide counselling for both patients and their families. The continuous observance of this holiday allows these groups to grow and reach a larger demographic, making counselling accessible to a large number of individuals.
It creates relationships with other families
Having a community of other T.S.C.-affected families is essential for morale and healthcare connections. Sharing information and providing patients with access to medical experts is essential for ensuring their comfort.
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