National Tuberous Sclerosis Day

National Tuberous Sclerosis Day is celebrated annually on May 15th in order to raise human awareness of this serious disease and to counteract social exclusion and stigmatization of people affected by it.

National Tuberous Sclerosis Day is dedicated to raising awareness about tuberous sclerosis, a rare genetic disorder and recognizing the suffering of people with this disorder. The month is also an opportunity for organizations and individuals to support people suffering from disorders. This is made possible through funded research that aims to alleviate symptoms and empower healthcare providers, educators, families of people with the disorder, and caregivers.

History of National Tuberous Sclerosis Day

National Tuberous Sclerosis Day is organized to raise awareness and share information about Tuberous Sclerosis, a rare genetic disorder that causes noncancerous tumors to develop in the brain, kidney, heart, life, lungs, eyes and skin. With vital organs affected, the disorder can cause significant growth retardation, seizures, mental disability, and skin abnormalities. Despite these problems, the life expectancy of people with this disorder is the same as that of people without the disorder.

This disorder is caused by mutations in two genes that prevent tumor growth in normal people - TSC1 and TSC2. A mutation in these genes leads to Tuberous Sclerosis Complex. In addition to immediate physical development problems, tuberous sclerosis complex causes neurological, developmental, and psychosocial problems in people with this disorder. Because these problems are difficult to diagnose, most patients suffer silently.

An important aspect of amyotrophic lateral sclerosis awareness month is to raise awareness of the common and uncommon problems posed by the disorder to the general public, as well as healthcare workers and individuals care. This ensures that people with the disorder get the help they need. Greater awareness enables early diagnosis and intervention at the physical and psychological levels. It is helpful in improving the quality of life of people with tuberous sclerosis. Moreover, it also gets more funding for research this disease and its potential treatments.

Some facts about Tuberous Sclerosis

• One million people are disordered

Although Tuberous Sclerosis Complex is a rare disease, many people are suffering from it worldwide.

• Can't be cured

Similiar to many genetic disorders, there is no cure for disorder. Treatment only involves managing symptoms.

• Diagnosis requires clinical and genetic testing

Since symptoms are primarily through rashes and tumors, some clinical tests are first conducted to rule out other, more common causes.

• Early diagnosis helps to solve developmental problems

Controlling seizures through medication and surgery has proven successful in helping young children grow at a normal rate without the growth retardation caused by tumors.

• Psychosis

About 90% of people with T.S.C. eventually diagnosed with autism, A.D.H.D., anxiety, depressive disorder, or any combination of these.

Some reasons for National Tuberous Sclerosis Day being important

• We feel people with T.S.C.

The difficulty of isolating disordered sounds. We would like to show our gratitude for people with T.S.C.

• We want to support research

Research into this disorder leads to new and improved treatments for T.S.C. We want to help ensure that people with the disorder receive the best care.

• We want to support carers

Healthcare workers and families of people with T.S.C. have to face a tough road ahead. As care is such a difficult task, we want to show our support to all those who care for people with T.S.C.

How to celebrate National Tuberous Sclerosis Day

• Volunteer at T.S.C. organ

The global network of tuberous sclerosis organizations has a list of member organizations on their website. Find your local organization relating Tuberous Sclerosis and find out if you can volunteer.

• Spread the word in your community

Print out information about tuberous sclerosis and distribute it to organizations in your community. You can also work with your community leaders to organize a talk about disorder in local schools and colleges.

• Run a fundraiser

The treatment of this disorder is constantly being researched. Support researchers by hosting a fundraiser to support their efforts!