Neurofibromatosis
Being able to accept my condition doesn’t mean I’ll just let it be and do nothing about it - Kcat Yarza
image by: Libby Huffer Faces of Neurofibromatosis
Resources
Alexander Owens’ Fight Against Neurofibromatosis
Neurofibromatosis is a genetic disorder that causes tumors to grow on nerve tissue throughout the body. NF can lead not only to disabling pain, but also to disfigurement, cancer and even death.
Callow's Call To Arms
Neurofibromatosis, commonly called Nf, is five times more common than Muscular Dystrophy. And yet–partly because the condition has so many disparate effects, and partly because of its cumbersome name–it has a very low public profile, compared with cancer or multiple sclerosis, and is consequently much harder to raise funds for
Lesson Learned
In 'every day life', my NF stays relatively quiet. I go about my day just trying to survive the craziness. I wake up, go to work...come home, spend time with the family...Go to bed, and begin again. Good days...Bad days....I just take them as they come.
Neurofibromatosis Type 1 and the “Elephant Man's” Disease: The Confusion Persists: An Ethnographic Study
Our findings show that some reference sources, past medical training, and print and online news media have all contributed to the persistence of the association between NF1 and the disease of Joseph Merrick, the “elephant man”. Our observations suggest that this misconception can have negative medical, social, and psychological impacts on patients and their families and thus increase the burden of the disease.
Raise Awareness and Ease the Stigma Around Neurofibromatosis
It is amazing how two small and insignificant letters, when placed side by side, can and will change your outlook on life dramatically. For example, IF and OF can be relatively harmless but NF is a very different combination.
A Child's View into NF
Hi! My name is Bailey and I have Neurofibromatosis. I am also living with brain tumors. I decided I wanted to do a blog to help kids that have NF.
Children’s Tumor Foundation
The Children’s Tumor Foundation is so much more than a funder of scientific research. We have revolutionized the field of NF research, forging new pathways for one reason and one reason only: to benefit the millions of people living with NF.
Life With Neurofibromatosis
A personal account of what it is like to live with NF, and how it has and continues to mold me.
Living in Chronic Pain from Neurofibromatosis
If you are new to this blog, start with "Bumps of Beauty" and other earlier pieces. "The desire for freedom, as it motivates us to our natural state is great joy; The desire to be free from the way things are is great suffering" (Stephen Levine)
My Love, My Sunshine, My little boy with NF1
A brief summery of things that have led up to my son being diagnosed with Neurofibromatosis type 1.
Neurofibromatosis (NF) Center
The Washington University NF Center is focused on accelerating the pace of scientific discovery and its application to the care of individuals with NF.
T's NF Journey
One Journey through life with a child affected by Neurofibromatosis Type 1 (NF-1).
The Neuro Foundation
The Neuro Foundation is the authoritative voice of Neurofibromatosis in the UK. We achieve this by providing first class information, support and advice; facilitating and promoting innovative research, and being an advocate for those with Neurofibromatosis.
The NF Network
The NF Network (formerly NF, Inc.) was founded in 1988. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities.The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts.
The Pathoetiology of Neurofibromatosis 1
Although a mutation in the NF1 gene is the only factor required to initiate the neurocutaneous-skeletal neurofibromatosis 1 (NF1) syndrome, the pathoetiology of the multiple manifestations of this disease in different organ systems seems increasingly complex.
Thriving with Neurofibromatosis
I grew up in a family where Neurofibromatosis was curse word. The utter mention of it grew guilt and fear in my parents. Understandably so. I was officially diagnosed with NF when I was 33 yrs old. I grew up watching my Mom and older brother struggle with the symptoms, but never had any real issues until after my own diagnoses. As a child, knew I was different, but no one knew it was because of NF.
KidsHealth
Of the three types of neurofibromatosis — NF1, NF2, and schwannomatosis — NF1 is most common. NF1, also known as von Recklinghausen disease, occurs in 1 of every 2,500 births and affects about 100,000 Americans.
Patient.info
Historically, descriptions of individuals thought now to have neurofibromatosis (NF) have been found in manuscripts dating back to 1000 AD. Von Recklinghausen coined the term 'neurofibroma' in 1881 to describe a benign tumour arising from the peripheral nerve sheath. Consequently, type 1 neurofibromatosis (NF1) is also known as Von Recklinghausen's disease.
Radiopaedia
Neurofibromatosis type 1 (NF1), also known as von Recklinghausen disease, is a multisystem neurocutaneous disorder and the most common phakomatosis. Additionally, it is also one of the most common inherited CNS disorders, autosomal dominant disorders and inherited tumour syndromes.
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