[Congressional Record (Bound Edition), Volume 146 (2000), Part 7]
[Extensions of Remarks]
[Pages 9439-9440]
[From the U.S. Government Publishing Office, www.gpo.gov]



        INTRODUCTION OF TUBEROUS SCLEROSIS AWARENESS RESOLUTION

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                           HON. SUE W. KELLY

                              of new york

                    in the house of representatives

                         Thursday, May 25, 2000

  Mrs. KELLY. Mr. Speaker, I rise today to introduce the Tuberous 
Sclerosis Awareness Resolution. Tuberous Sclerosis is a common genetic 
disorder that remains poorly understood. Even though 1,000,000 people 
worldwide are affected with the disease, few are even aware of it.

[[Page 9440]]

  Tuberous Sclerosis is a genetic disorder that causes benign tumors to 
form in any of the vital organs--including the brain, eyes, heart, 
kidneys, and skin. It is often first recognized because of epileptic 
seizures and/or varying degrees of developmental delay. But, too often 
Tuberous Sclerosis goes undetected or is misdiagnosed because its 
symptoms are similar to those of more well-known diseases, such as 
epilepsy or autism. However, more recognition and early diagnosis is 
desperately needed. Infants and children too often spend their lives 
being misdiagnosed, possibly leading to irreparable brain damage, 
kidney failure, and even premature death. With a variety of treatments 
currently available to ease symptoms and improve the quality of life 
for people with Tuberous Sclerosis, diagnosis is critical.
  Mr. Speaker, as May is Tuberous Sclerosis Month, I urge my colleagues 
to join me in bringing awareness to a devastating disease that affects 
at least one child born each day. By helping America to learn about and 
understand Tuberous Sclerosis, we will help to improve the quality of 
life for many children.

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