News Release
For Immediate Release
November 17, 2011
Contact: Aaron Zappia
(215) 657-7700

Senate Approves Greenleaf's Resolution Designating December 4th as Pallister-Killian Syndrome (PKS) in Pennsylvania

On Wednesday, November 16, the Pennsylvania Senate approved Senator Greenleaf's Senate Resolution 232 designating December 4th, 2011 as Pallister-Killian Syndrome (PKS) Awareness Month in Pennsylvania.

Pallister-Killian Syndrome (PKS) is a rare genetic disorder affecting less than 300 persons worldwide.  However many doctors believe that the incidence of PKS is much higher, possibly as many as 2,000 cases exist in the United States alone.  Is often diagnosed at birth but diagnosis does not always come easy.

It causes children to suffer low muscle tone, seizures, global developmental delays, hearing and vision loss among other conditions.  Children with PKS often have trouble walking, sitting up, crawling, talking, and rolling over.  PKS causes delays in cognitive development, learning and physical disabilities.

There is no cure and the person suffering with PKS may be required to undergo many tough surgeries in a short time span.

Because PKS is so rare, there is not much scientific or medical research available.  PKS can be difficult to diagnose because it is not easily detected by a blood test, and often not even tested for.  A mouth swab of mucus or a skin biopsy is the best way to determine if your child has PKS.

Although there is not much medical research on Pallister Killian Syndrome there are a few support groups available.  PKS Kids is a non-profit organization offering information, advice, support, and resources for children with PKS.  PKS Kids can be found at www.pkskids.net.

Children with PKS can grow into puberty and beyond, others may die at birth or shortly thereafter, and some may even live into their 40's with severe disabilities.

Senator Greenleaf became aware of PKS from a local family with a child suffering from the condition. 

"While this disease is very rare, those afflicted suffer greatly because of the limited amount of information available and difficulty of diagnosis," said Senator Greenleaf.  "This is a disease that deserves more public awareness and more research by the medical community.  I hope that today's resolution will serve to raise more public awareness about this serious childhood disease."