HEART INVOLVEMENT
Manifestations
Testing of the heart using echocardiography is performed to visualize cardiac rhabdomyomas, the most common primary cardiac tumor of tuberous sclerosis complex (TSC) in infancy and childhood. The incidence of these tumors in TSC has been reported to vary from 47 percent to 67 percent. Childhood tumor regression is the rule. In other words, in most cases, cardiac tumors are their largest at birth and may shrink or disappear as the individuals grow older. A second peak in the incidence of these tumors may occur during puberty. Electrocardiograms (EKGs) are used to detect abnormal heart rhythms or arrhythmias. Any symptoms should be monitored by a cardiologist who is aware of the risks involved for individuals with TSC.
Treatment
Cardiac rhabdomyomas are more likely to be the cause of heart failure in a newborn infant or young child than in an adult with TSC. Most rhabdomyomas of the heart are asymptomatic, but they should be treated by an experienced cardiologist if an arrhythmia or other cardiac problem is present. Cardiac arrhythmias infrequently have developed in children just after starting carbamazepine (Tegretol), used for the treatment of epilepsy. Reports have also shown a significant increase in the size of cardiac rhabdomyomas in infants with TSC with infantile spasms who are treated with adrenocorticotropic hormone (ACTH). Therefore, echocardiograms and EKG baseline measurements should be obtained before initiating these treatments.
Tuesday, May 26, 2009
Sunday, May 24, 2009
Tuberous Sclerosis Complex
WHAT IS TSC?
Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome.
The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.
How many people have TSC?
At least two children born each day will have tuberous sclerosis complex. Current estimates place tuberous sclerosis complex-affected births at one in 6,000. Nearly 1 million people worldwide are known to have TSC, with approximately 50,000 in the United States. There are many undiagnosed cases due to the obscurity of the disease and the mild form symptoms may take in some people. TSC is as common as ALS (Lou Gehrig's Disease) but virtually unknown by the general population.
How does a person develop TSC?
Tuberous sclerosis complex is transmitted either through genetic inheritance or as a spontaneous genetic mutation. Children have a 50 percent chance of inheriting TSC if one of their parents has this condition. At this point, only one-third of TSC cases are known to be inherited. The other two-thirds are believed to be a result of spontaneous mutation. The cause of these mutations is still a mystery
Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome.
The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.
How many people have TSC?
At least two children born each day will have tuberous sclerosis complex. Current estimates place tuberous sclerosis complex-affected births at one in 6,000. Nearly 1 million people worldwide are known to have TSC, with approximately 50,000 in the United States. There are many undiagnosed cases due to the obscurity of the disease and the mild form symptoms may take in some people. TSC is as common as ALS (Lou Gehrig's Disease) but virtually unknown by the general population.
How does a person develop TSC?
Tuberous sclerosis complex is transmitted either through genetic inheritance or as a spontaneous genetic mutation. Children have a 50 percent chance of inheriting TSC if one of their parents has this condition. At this point, only one-third of TSC cases are known to be inherited. The other two-thirds are believed to be a result of spontaneous mutation. The cause of these mutations is still a mystery
Michael-Reese Stewart Fundraiser
Bethel Christian Church Benefit
Michael-Reece Stewart
Host:Bethel Christian Church
Type:Causes - Fundraiser
Network:Global
Date:Saturday, May 30, 2009
Time:4:00pm - 7:30pm
Location:Bethel Christian Church
Street:1991 PHILLIPS RD NICHOLASVILLE, KY 40356
Phone:8598588335
Description
Bethel Christian Church
Bethel Christian Church
will host a benefit for
Michael-Reece Stewart
(daughter of Mark and
Kim Grimes Stewart)
Saturday May, 30th
from 4-7:30 p.m.
Singing Begins at 6pm
Reece suffers from the genetic disorder Tuberous Sclerosis Complex (TS) and numerous complications of the disease.
TS is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.
All funds raised will be given directly to the family to aide in medical necessities for her.
Please join us with your lawn chair or blanket for an outdoor gospel concert, meal, and silent auction and support one of the communities
special needs children.
TO HELP PLEASE DONATE A ITEM FOR THE AUCTION AND/OR CASH DONATIONS WILL ALSO BE APPRECIATED.
BETHEL CHRISTIAN CHURCH
1991 PHILLIPS RD NICHOLASVILLE, KY 40356
859.858.8335
Michael-Reece Stewart
Host:Bethel Christian Church
Type:Causes - Fundraiser
Network:Global
Date:Saturday, May 30, 2009
Time:4:00pm - 7:30pm
Location:Bethel Christian Church
Street:1991 PHILLIPS RD NICHOLASVILLE, KY 40356
Phone:8598588335
Description
Bethel Christian Church
Bethel Christian Church
will host a benefit for
Michael-Reece Stewart
(daughter of Mark and
Kim Grimes Stewart)
Saturday May, 30th
from 4-7:30 p.m.
Singing Begins at 6pm
Reece suffers from the genetic disorder Tuberous Sclerosis Complex (TS) and numerous complications of the disease.
TS is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.
All funds raised will be given directly to the family to aide in medical necessities for her.
Please join us with your lawn chair or blanket for an outdoor gospel concert, meal, and silent auction and support one of the communities
special needs children.
TO HELP PLEASE DONATE A ITEM FOR THE AUCTION AND/OR CASH DONATIONS WILL ALSO BE APPRECIATED.
BETHEL CHRISTIAN CHURCH
1991 PHILLIPS RD NICHOLASVILLE, KY 40356
859.858.8335
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