Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi everyone, I just wanted to let everyone know that the CBC is featuring a story on The National this evening regarding Newborn screening in Canada. My daughter Jenna's story will be featured for this segment. Take care Tammy Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 I saw the segment, its something ive thought alot about. When was born, we actually purchased supplimental screening from a lab in the US (were in Manitoba), as I had alot of health problems, and we wanted to feel we had our bases covered with . The screening actually did pick up a low carnatine level, but the doctor we were seeing at the time told us if he had a deficiency he would have gotten very sick in the first few weeks, so we didnt have to bother retesting (grrrrr). As it was we went another year before he got sick, and 2 years before we got the diagnosis... Its frustrating to know we could have had all these answers so long ago. I was so surprised at how little Health Canada screens for, in comparison to most states... Keely > Hi everyone, > > I just wanted to let everyone know that the CBC is featuring a story on The National this evening regarding Newborn screening in Canada. > My daughter Jenna's story will be featured for this segment. > > Take care > Tammy > > > --------------------------------- > Celebrate Yahoo!'s 10th Birthday! > Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Hi Keely, I am hoping that people affected by the lack of newborn screening for these disorders will contact the CBC and voice their support for expanded newborn screening throughout Canada. As the story pointed out last evening if our daughter had been born in Nova Scotia, B.C., Sask. or PEI, her MCAD would have most likely been detected. Early diagnosis would have been the key to saving her life. MCAD is one of the simpler inheritable metabolic disorders to treat. Avoidance of fasting is the most important component to treatment of the disorder, especially when the child is ill. There has been some discussion as to whether or not carnitine supplements are required, but aside from that most children can live "normal" healthy lives providing they know that they have the disorder. The link to the CBC story is http://www.cbc.ca/story/science/national/2005/03/08/newborn-screen050308.html Thanks again Tammy ilikemonstertrucks wrote: I saw the segment, its something ive thought alot about. When was born, we actually purchased supplimental screening from a lab in the US (were in Manitoba), as I had alot of health problems, and we wanted to feel we had our bases covered with . The screening actually did pick up a low carnatine level, but the doctor we were seeing at the time told us if he had a deficiency he would have gotten very sick in the first few weeks, so we didnt have to bother retesting (grrrrr). As it was we went another year before he got sick, and 2 years before we got the diagnosis... Its frustrating to know we could have had all these answers so long ago. I was so surprised at how little Health Canada screens for, in comparison to most states... Keely> Hi everyone,> > I just wanted to let everyone know that the CBC is featuring a story on The National this evening regarding Newborn screening in Canada. > My daughter Jenna's story will be featured for this segment.> > Take care > Tammy > > > ---------------------------------> Celebrate Yahoo!'s 10th Birthday! > Yahoo! Netrospective: 100 Moments of the WebPlease contact mito-owner with any problems or questions. Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
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