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Pre-natal leukodystrophy screening as mandatory

Pre-natal leukodystrophy screening as mandatory

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Started by Anonymous 17 years, 9 months ago
what is a Leukodystrophy The group of disease's known as leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which the white matter of the brain takes its colour from, is a complex substance made up of at least ten different chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls the production or metabolism of one (and only one) of the component molecules of myelin. Leukodystrohpies are degenerative in there effect on the human body, reversing all natural development. Often beginning in the legs, the sufferer will lose the ability to walk, stand, sit until all voluntary movement is nil, hearing and eye sight will also be lost, eventually the sufferer will develope dementia before the brain dies. What's also a scary prospect of this disease is that you wont even know you (or your child, friend, relative) has it until the regression starts. Unless detected before the onset of the condition, these disease's are incurable. Studies show that the success rate will be higher if the disease is in fact detected in the womb, Where it can be treated by Bone Marrow transplant or Stem cell. The condition may be quite rare, until it effects you or someone you know. Please sign this petition to make prenatal screening for these disease's a mandatory process.

Updates

March 10, 2009

The health department is still ignoring the medical reality that early detection saves lives. My inbox is full of heartbreaking stories from families who had no warning before this disease stole their world. We are not going to let them sweep this under the rug while children suffer.

6 Comments

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Amy Sinclair
17 years ago Featured

heartbreaking read. so much pain could be avoided if we just catch it early. please make this the law.

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Sarah Wilkinson
17 years ago Featured

Every baby deserves a fighting chance. If we have the technology to stop this before a child suffers we have to use it.

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Tom Nguyen
17 years ago Featured

Testing should be available for everyone. Stop ignoring these rare diseases just because they dont happen as often.

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Lisa Kumar
17 years ago Featured

My nephew had this. Its a nightmare no family should go through. Please make this happen.

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David Hassan
17 years ago Featured

It is absolutely cruel to leave parents in the dark until it is too late. Mandatory testing now.

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Mike Patterson
17 years ago Featured

Why isnt this already standard?? Seems like a no brainer to test for something so devastating.

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