K.I.D.S. IQ Project was established with a mission of funding and developing therapeutic drug treatments for ID disorders such as KS. Recent advances in scientific research suggest that our understanding of KS is at a point where drug treatments can be investigated and are indeed possible.
The complications resulting from KS could be fatal, although the number of known fatalities is not well documented.
While understood to be rare, parents should get a genetic test to confirm that they are not carriers of KS. In addition, parents may want to test for a chromosomal translocation which may also cause KS to occur in children.
While understood to be rare, parents should get a genetic test to confirm that they are not carriers of KS. In addition, parents may want to test for a chromosomal translocation which may also cause KS to occur in children.
Speech delays and problems are a cardinal feature of KS. There are currently no known cases of KS kids with full/normal speech capability. Those more advanced are still limited in their vocabulary, although it is generally believed that KS kids comprehend more than they can communicate.
Approximate 50% of KS kids are believed to be affected by a heart condition, although may not be life threatening; such diagnosis should be confirmed with your doctor or specialist.
There are currently no known cases of a KS kids with an average or above-average IQ. Generally IQs fall below the intellectual disability threshold of an IQ of 70, although some KS kids may be slightly above that level. That said, it is generally believed that KS kids comprehend more than they can communicate.
It is believed that approximately 33% of KS kids have seizures and the age at which this occurs can vary dramatically (such as early in childhood to teenage years).
It is believed that in excess of 20% of KS patients may be on the Autism Spectrum Disorder, although data in this regard is limited and should not be relied on as such.
KS patients are found to be on a broad spectrum. While certain cardinal traits will exist (such as intellectual disability, speech delays/problems, development delays), there can a high degree of variance in other features.
Data remains limited, but it is understood that any sized deletion will still result in KS. Even smaller deletions can be associated with moderate to severe traits. Large deletions may be linked to more serious issues but again, the data is limited.
Both deletions and mutations result in KS.
Microarray analysis, FISH analysis, exome sequencing or whole genome sequencing through a genetics department.
The EHMT1 deletion or mutation (or rare duplication) that results in KS is almost always “de novo”, meaning the deletion or mutation is something that neither parent possessed or transmitted. In certain cases, any parent that has KS (or a chromosomal translocation) can also pass KS on to their children, although these circumstances are understood to be quite rare.
Based on the available data, KS can affect any child without regard for race, origin, gender, geography or other common differentiating factors. Any parent that has KS (or a chromosomal translocation) can also pass KS on to their children, although these circumstances are understood to be quite rare; typically, KS is a de novo occurrence (meaning neither parent possessed or transmitted the deletion or mutation).