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KNOTTY'S WORLD
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RACING for a CURE
I'm a 42 yr. old Native American CHEROKEE male.I am not your ordinary looking guy,as I have a hereditary disease called Neuro-fibroma-tosis. which causes small to large tumors to grow all over body, which also progressively gets worse as you age. NEUROFIBROMATOSIS
(NF for short)
A Big Word!Lots of syllables! Lots of problems!What is NF? You ask.
NF stands for Neurofibromatosis (neuro-fibro-ma-toe-sis) which is complex genetic disorder of the nervous system which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and even death. NF knows no boundaries, as it is equally common in males and females and every racial and ethnic group, and 50% of all the people with NF have no family history of the disorder. While not all NF patients suffer from the most severe symptoms, all live with the uncertainty of not knowing if, or when, they might be severely affected because NF is a highly variable, and progressive disease.Facts & StatisticsNF has been classified into three distinct types; NF1, NF2 and Schwannomatosis. They are caused by different genes, located on different chromosomes.NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene.NF1 is the more common form of NF, occurring in 1:4,000 births throughout the world.NF2 is a rarer type, occurring in 1:40,000 people worldwide.While today there is no consensus, studies indicate that Schwannomatosis occurs in 1:40,000 people, similar to NF2.The Neurofibromatoses are genetically-determined disorders which affect more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; and learning disabilities.NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.NF2 brings on increased risk of other types of nervous system tumors as well.NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that John Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.Disease is so negative. NF is not contagious.Neurofibromatosis is considered a member of the neurocutaneous syndromes (phakomatoses). In addition to the types of neurofibromatosis, the phakomatoses also include tuberous sclerosis, Sturge-Weber syndrome and von Hippel-Lindau disease. This grouping is an artifact of an earlier time in medicine, before the distinct genetic basis of each of these diseases was understood.
About Neurofibromatosis 1
A new brochure updated by our Clinical Care Advisory Board which provides a general overview of/introduction to NF1.
About Neurofibromatosis 2
A new brochure updated by our Clinical Care Advisory Board which provides a general overview of/introduction to NF2.
About Schwannomatosis
A new brochure updated by our Clinical Care Advisory Board which provides a general overview of/introduction to Schwannomatosis.
Questions & Answers
The pamphlet provides answers to the most commonly asked questions about NF, including:What is NF?
What forms does NF take?
How common is NF?
How in NF inherited?
What are the symptoms of NF?
What are the early signs of NF?
How does NF affect the brain?
Can NF develop into cancer?
How does NF affect a person's physical appearance?
Does NF remain stable over a lifetime or does it get worse with age?
Can NF be cured?
If a child has NF what should you watch for?
If people suspect they have NF who should they contact?
What research is currently being done on NF?
Neurofibromatosis Type One: A Guide for Educators
This 12 page booklet is written in question and answer format and provides concise and practical information and recommendations about the cognitive, behavioral and physical manifestations of the disorder. It was developed by Dr. Bruce Korf, a neurologist at Harvard Medical School.
Facing Neurofibromatosis: A Guide for Teens
This booklet has been written to explain what is known about neurofibromatosis, and what can be done to help deal with it. It was developed by Dr. Bruce Korf, Gretchen Schneider, M.S. and Diana Platt Frenkel of the NF Program at Children's Hospital, Boston.
Achieving in Spite of...A Booklet on Learning Disabilities
Designed for use by parents, teachers and health professionals, this 34-page booklet includes information on what learning disabilities are and what to do about them.
Co-authors, Dr. Constance Veaco Dilts, University of Utah Medical Genetics Program; Salt Lake City, Utah - North Clackamas School District; Milwaukie, Oregon, and Pamela Bellermann, in conjunction with the Advisory Board Members of the Maniet Bellermann Foundation, Inc., define a learning disability as a short circuit or dysfunction in one or several of the channels through which information gets to the brain - visual, auditory or tactile input.The Child with Neurofibromatosis Type 1
This brochure is dedicated to the families who live with neurofibromatosis, and their friends who help provide support and encouragement. It is the purpose of this brochure to attempt to place mild or early neurofibromatosis in perspective. To some extent, neurofibromatosis is an unpredictable condition and uncertainty is inevitable. It is hoped, however, that access to accurate medical information will make this uncertainty easier to live with and understand.Funding Opportunities for NFhttp://www.causes.com/myspace/cause_memberships/recruit?ca
use_id=72331&recruiter_id=14162921
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MY PAYPAL ACCOUNT
Thanks in Advance.
Visit My StoreKNOTTY'S WORLD
'Women and nervous persons fly in terror
from the site of him,
and that he is debarred from seeking to earn
a livelihood
in any ordianary way,
yet he is superior in intelligence,can read
and write,
is quiet,gentle
not to say even refined in his mind.'
