- Posted January 20, 2014 by
palos park, Illinois
This iReport is part of an assignment:
Living with a rare disease?
World Rare Disease Day
About four years ago my niece has been diagnosed with leukodystrophy called Vanishing White Matter (VWM). Until 2009 I've never heard of leukodystrophy. Vanishing White Matter Disease (VWM) is a form of Leukodystrophy. It is a devastating condition that destroys the brain's white matter. It is a chronic and progressive leukodystrophy with episodes of severe decline following infection, fever, head trauma and acute fright. Following an infection with fever, a patient may deteriorate for days with loss of motor skills, loss of vision, epileptic seizures, vomiting, irritability, depressed consciousness and finally coma. Some patients die during the coma; others recover slowly, but never to the same level as before the coma. The disorder causes deterioration of the central nervous system's white matter which consists of nerve fibers covered by myelin. Myelin is the fatty substance that insulates and protects nerves. There is no cure or treatment for the disease. Life expectancy of a child diagnosed with this disease is only into the early teens. VWM is a rare disease , very few physicians know about it, and even fewer scientists are interested in studying it.
"If all people with "Rare Diseases" lived in one country, it'd be the world's 3rd most populus country," according to the Global Genes Project. It's time for those voices to be unified, and this can happen partly through stations such as yours raising awareness.
The Global Genes Project has a wealth of information about Rare Diseases and is actively promoting World Rare Disease Day. Global Genes Project can also be found on Facebook - https://www.facebook.com/globalgenesproject?ref=ts&fref=ts