I don’t know if anyone noticed the new name of the blog but I changed it from “JUST ASK!” to “NF CAFE”. I just thought that NF Cafe felt like a more friendly kind of place to relax, hang-out and talk with friends and have a good time.
I wanted to throw this name out there to see what you thought. I like the name because it has a lot of different meanings to a lot of different people.
Most of us here enjoy our coffee. Shelley and Brian to extreme levels!!! : > ) When I think of coffee, I think of relaxing and good thoughts and good times.
When I think of cafe, I think about relaxing with a nice cup of coffee or going to a nice place for coffee and just enjoying nice conversation with a friend. Like we do here.
It’s an easy name to remember, kind of rolls off the tongue. Also, Cafe and CAFE AU LAIT have a bit of a double meaning to NF people.
So tell me what do you think? Do we keep it as the name of our blog or do we go back to “Just Ask!”? Now let me say that “JUST ASK!” is still the name of my website and will always be. NF CAFE is just a catchy name that we can enjoy and have fun with it.
What say you?
Check out Wikipedia on neurofibromatosis
From Wikipedia, the free encyclopedia
Classification & external resources
Neurofibromatosis is an autosomal dominant genetic disorder. It encompasses a set of distinct genetic disorders that cause tumors to grow along types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. The tumors can grow anywhere on or in the body. Incidence is 1:3,000.  
Joseph Merrick, the Elephant Man, was once considered to have been afflicted with either elephantiasis or neurofibromatosis type I. However, it is now generally believed that Merrick suffered from the very rare Proteus syndrome or perhaps a combination of the two conditions.
Apart from the common form, there are two rarer forms and several even rarer forms:
- Neurofibromatosis type I (was known as Von Recklinghausen disease after Friedrich Daniel von Recklinghausen). Incidence is 1:3500.
- Schwannomatosis is a rare form that is clinically and genetically distinct from types I and II. Multiple Schwannomas (rather than Neurofibromas) occur, and about one-third of patients have these tumors in only one part of the body. Incidence is 1:40,000. The vestibular nerve is spared. Pain is the primary symptom, although numbness, tingling and weakness can also occur. Schwannomas are always benign.
- Five other, extremely rare, forms are also recognized:
- Online ‘Mendelian Inheritance in Man’ (OMIM) 162210 – NEUROFIBROMATOSIS, FAMILIAL SPINAL
- Online ‘Mendelian Inheritance in Man’ (OMIM) 162220 – NEUROFIBROMATOSIS, FAMILIAL INTESTINAL; NF3B
- Online ‘Mendelian Inheritance in Man’ (OMIM) 162240 – NEUROFIBROMATOSIS-PHEOCHROMOCYTOMA-DUODENAL CARCINOID SYNDROME
- Online ‘Mendelian Inheritance in Man’ (OMIM) 162260 – NEUROFIBROMATOSIS, TYPE III, MIXED CENTRAL AND PERIPHERAL; NF3A
- Online ‘Mendelian Inheritance in Man’ (OMIM) 601321 – NEUROFIBROMATOSIS-NOONAN SYNDROME; NFNS
Neurofibromatosis type 1 – mutation of neurofibromin chromosome 17q11.2
- multiple neurofibromas on the skin and under the skin; the subcutaneous lumps are characteristic of the disease and increase in number with age.
- freckling of the groin and the arm pit.
- a predisposition to particular tumors (both benign and malignant). These tumors are called neurofibromas.
- Café au lait spots (pigmented birthmarks). Six or more of these form one of the diagnostic criteria, but are not essential for diagnosis.
- skeletal abnormalities such as scoliosis or bowing of the legs might occur
- Lisch nodules (hamartomas of iris)
- tumor on the optic nerve, also known as an Optic Glioma
Neurofibromatosis type 2 – mutation of merlin chromosome 22q12
- bilateral tumors, acoustic neuromas on the vestibulocochlear nerve
- the hallmark of NF 2 is hearing loss due to acoustic neuromas around the age of twenty
- the tumors may cause:
Schwannomatosis – gene involved has yet to be identified
- Multiple Schwannomas occur.
- The Schwannomas develop on cranial, spinal and peripheral nerves.
- Chronic pain, and sometimes numbness, tingling and weakness.
- About 1/3 of patients have segmental Schwannomatosis, which means that the Schwannomas are limited to a single part of the body, such as an arm, a leg or the spine.
- Unlike the other forums of NF, the Schwannomas do not develop on vestibular nerves, and as a result, no loss of hearing is associated with Schwannomatosis.
- Patients with Schwannomatosis do not have learning disabilities related to the disease.
 Genetics and Hereditability
Both NF1 and NF2 are autosomal dominant disorders, meaning that only one copy of the mutated gene need be inherited to pass the disorder. A child of a parent with NF1 or NF2 and an unaffected parent will have a 50% chance of inheriting the disorder.
Complicating the question of heritability is the distinction between genotype and phenotype, that is, between the genetics and the actual manifestation of the disorder. In the case of NF1, no clear links between genotype and phenotype have been found, and the severity and specific nature of the symptoms may vary widely among family members with the disorder. In the case of NF2, however, manifestations are similar among family members; a strong genotype-phenotype correlation is believed to exist (ibid).
Both NF1 and NF2 can also appear spontaneously through random mutation, with no family history. These spontaneous or sporadic cases account for about one half of neurofibromatosis cases (ibid).
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.
 Neurofibromatosis in Pop Culture
In the television series Dallas, the inherited neurofibromatosis of the Barnes family is a driving plot device, although the portrayal of the condition does leave something to be desired in terms of scientific fact.
 Notable Cases
In November 2006, there was an hour-long documentary on the British television network Channel 4 about Facing the World, an organization that helps children with severe facial disfigurements in developing countries. One of the children featured on the documentary was Arianto, an Indonesian boy who suffered from a severe form of neurofibroma resulting in hemifacial giganticism.
In January 2008, 32-year-old Huang Chuncai of China underwent a second operation to remove another 9.9 lb (4.5 kg) of tumor from his face. A previous operation removed 33 pounds (15 kg) from what was originally a 55.7 lb (23 kg) tumor.  
 See also
- ^ n_06/12568911 at Dorland’s Medical Dictionary
- ^ neurofibromatosis — Britannica Online Encyclopedia. Retrieved on 2008-01-29 from http://www.britannica.com/eb/article-9055381/neurofibromatosis.
- ^ Neurofibromatosis Fact Sheet. Retrieved on 2008-01-29 from http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm.
- ^ doctor/1174 at Who Named It
- ^ Fauci, et al Harrison’s Principle of Internal Medicine 16th Ed. p 2453
- ^ Korf, Bruce E. and Allan E. Rubenstein. 2005. Neurofibromatosis: A Handbook for Patients, Families, and Health Care Professionals.
- ^ ABC News: 50-Pound Face Tumor: One Man’s Nightmare. Retrieved on 2008-01-23.
- ^ Radford, S. (2008-01-11). Chinese man has surgery for 10kg face tumour. Retrieved on 2008-01-29 from http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2008/01/09/whuang109.xml.
 External links
- Information page from the National Institute of Neurological Disorders and Stroke (part of the National Institutes of Health in the United States) — this Wikipedia article is based largely on this NINDS information page
- Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis at National Institute on Deafness and Other Communication Disorders
- NEUROFIBROMATOSIS from the National Center for Biotechnology Information
- Neurofibromatosis at the Open Directory Project
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