Tuesday, October 26, 2010

Community Involvement



Intro: Hello, my name is JuIie I am a student at FVTC and I am interested in neurofibromatosis also called NF because… I recently received an email about NF and I was surprised that I had never heard of it before and I want to take this opportunity to teach a little of what I learned through researching NF on the Internet.


I learned that it affects children.


What does NF cause: It causes tumors to grow anywhere in the body including the brain and spine. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions such as serious skeletal abnormalities, amputation and deafness, and significant learning disorders


How it is DX: NF is dx by five or more dime-sized light brown spots on the child’s body. Usually these spots are not seen on the face. There is no cure for NF although an early diagnosis can save a child from becoming disabled.


Where can I find additional information about neurofibromatosis type 1?


Resources about neurofibromatosis type 1 helpful written for the general public.


MedlinePlus - Health information (2 links)


Genetic and Rare Diseases Information Center - Information about genetic conditions and rare diseases (2 links)


Additional NIH Resources - National Institutes of Health (2 links)


Educational resources - Information pages (15 links)


Patient support - For patients and families (5 links)


Resources, which are designed for healthcare professionals and researchers.


Gene Reviews - Clinical summary


What other names do people use for neurofibromatosis type 1?


Neurofibromatosis 1/NF1/Peripheral Neurofibromatosis


Recklinghausen Disease, Nerve/von Recklinghausen Disease


I feel that public awareness of NF can possibly lead to a cure.


Thank you for your time,


Julie Oyen Nursing student

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