AUSTRALIA CHILDREN WITH SWAN ILLNESS - SYNDROME WITHOUT A NAME

 

Thousands of Australian children are suffering from baffling illnesses that so far have eluded proper diagnoses. 

 

SWAN Australia president Heather Renton, whose seven-year-old daughter Becky has not been diagnosed, said there needed to be more government-funded genetics research and more support available for children with unknown conditions.

 

She said families weren't angry at not having a diagnosis but rather frustrated at the limits of science.

Professor Ravi Savirirayan, a member of the genetics team at the Murdoch Childrens Research Institute, said brave parents of children who haven't been diagnosed face many years of dedicated care for their kids because access to funding for support can be difficult.

 

"A lot of them do fall through the cracks, which is quite sad," he said.

 

Murdoch Childrens Research Institute director Professor Kathryn North said technology to diagnose rare conditions was improving rapidly and children without diagnosis were encouraged to be tested regularly.

 

"Living with the unknown is much more stressful than in receiving a severe diagnosis, because you just don't know what to expect. There's immense uncertainty," Prof North said.

Read more -
http://www.news.com.au/lifestyle/health/swan-kids-the-thousands-of-children-with-illnesses-so-rare-they-don8217t-even-have-a-name/story-fneuz9ev-1226678975989

http://www.swanaus.com.au/index.php/homepage/definitions

RELATED

NEW DNA DATABASE FOR CHILDREN WITH MYSTERY ILLNESSES JUST DEVELOPED
http://ottersandsciencenews.blogspot.ca/2014/02/mystery-illnesses-dna-data-base.html

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