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    Posted January 20, 2014 by
    skwid018
    Location
    palos park, Illinois
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    More from skwid018

    World Rare Disease Day

     
    Last day in February, this year Friday, February 28th, is World Rare Disease Day. One in ten people live with a rare disease. The Global Genes Project http://globalgenes.org/ has asked that we wear jeans in honor of those with rare genes, for 80% of these rare diseases are caused genetically. There are 7,000 rare diseases, and less than 400 treatments approved by the FDA for these 7,000 diseases. 50% of those affected are children. Only 15% of rare diseases have organizations or foundations providing support or doing research. This means that most people do not have adequate support or treatment as they face the unique struggles of living with their rare disease.

    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

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