The only clinical diagnostic laboratory that tests for Cockayne
Syndrome is located at the renowned Children`s Hospital Boston, where
testing advancements were recently developed through work directed by
Dr. Edward Neilan and Dr. Bai-Lin Wu.
Share and Care Cockayne Syndrome Network, Inc. is a worldwide support
group providing information to families and professionals with an
interest in Cockayne Syndrome (CS). The group was founded in 1986 by
Pat Cahill when her son, Scott, was diagnosed with CS. The organization
is a non-profit with 501 (c) (3) status.
Cockayne Syndrome is relatively unknown and occurs with many side
effects, the most severe of which are advanced aging and shortened life
span (Progeria). Children with the condition share characteristics that
should make it easy to diagnose — these kids look and sound almost
identical and resemble each other more than they resemble their own
siblings. However, since many in the medical community are not aware of
the symptoms, children often die before age six or seven without a
diagnosis.
It is believed there may be several thousand cases of Cockayne Syndrome
worldwide, but only about 200 have been reported in the U.S. It is
found equally among girls and boys and occurs in nearly every country.
Many parents of children with the disease share the same story of a
tireless search for answers and an elusive diagnosis until they happen
to encounter someone familiar with the disease that recognizes the
symptoms.
Families and others living with an incorrect or no diagnosis would
benefit greatly in knowing the cause of the symptoms. Some medications
are available that can make these little patients more comfortable, and
families` fruitless efforts to stimulate growth could be stopped. In
addition, the emotional anguish of searching for answers would be over,
and children would not have to undergo endless testing that can be
uncomfortable.
Share and Care Cockayne Syndrome Network wants families to know there
are resources available to help them and that they`re not alone.
Individuals and families affected by Cockayne Syndrome implore you to
join us in the effort to educate the public about this rare disorder.
Jackie Clark, President
Share and Care Cockayne Syndrome Network, Inc
Helping children with Cockayne syndrome and their families improve
their quality of life through support, education and research.
www.cockaynesyndrome.net
Contact:
Share & Care, Cockayne Syndrome
Network Inc.
Phone: 703-727-0404
E-mail: Click
Here to Send
http://www.cockaynesyndrome.net
Share & Care, CS Network
P.O. Box 282Waterford, VA 20197