coffee.jpgI 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


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Classification & external resources
ICD10 Q85.0
ICD9 237.7
ICD-O: 9540/0
eMedicine derm/287
MeSH D017253

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.[1] The tumors can grow anywhere on or in the body. Incidence is 1:3,000. [2] [3]




[edit] History

Neurofibromatosis was discovered in 1882 by von Recklinghausen. He wrote on it and published it in Hämochromatose, Tageblatt der Naturforschenden Versammlung.[4]

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.

[edit] Types

Apart from the common form, there are two rarer forms and several even rarer forms:

  • 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.

[edit] Symptoms

Neurofibromatosis type 1 – mutation of neurofibromin chromosome 17q11.2

plexiform neurofibroma

plexiform neurofibroma

Patient with multiple small cutaneous neurofibromas and a 'café au lait spot' (bottom of photo, to the right of centre). A biopsy has been taken of one of the lesions

Patient with multiple small cutaneous neurofibromas and a ‘café au lait spot’ (bottom of photo, to the right of centre). A biopsy has been taken of one of the lesions

Neurofibromatosis type 2 – mutation of merlin chromosome 22q12

Schwannomatosis – gene involved has yet to be identified

  1. Multiple Schwannomas occur.
  2. The Schwannomas develop on cranial, spinal and peripheral nerves.
  3. Chronic pain, and sometimes numbness, tingling and weakness.
  4. 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.
  5. 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.
  6. Patients with Schwannomatosis do not have learning disabilities related to the disease.

[edit] Genetics and Hereditability

NF-1 and NF-2 may be inherited in an autosomal dominant fashion, as well as through random mutation.

NF-1 and NF-2 may be inherited in an autosomal dominant fashion, as well as through random mutation.

Neurofibromatosis type 1 is due to mutation on chromosome 17q11.2 , the gene product being Neurofibromin ( a GTPase activating enzyme).[5]

Neurofibromatosis type 2 is due to mutation on chromosome 22q , the gene product is Merlin, a cytoskeletal protein.

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.[6] 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).

[edit] Family

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.

[edit] 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.

The disease is also a pivotal plot element in the Icelandic film Mýrin (Jar City) and Tainted Blood, the novel on which it was based.

Gillian Anderson, who played Scully on the X-Files, is a spokesperson and helps in the raising of money for neurofibromatosis, due to the fact that her brother suffers from the disease.

[edit] 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. [7] [8]

[edit] See also

[edit] References

  1. ^ n_06/12568911 at Dorland’s Medical Dictionary
  2. ^ neurofibromatosis — Britannica Online Encyclopedia. Retrieved on 2008-01-29 from
  3. ^ Neurofibromatosis Fact Sheet. Retrieved on 2008-01-29 from
  4. ^ doctor/1174 at Who Named It
  5. ^ Fauci, et al Harrison’s Principle of Internal Medicine 16th Ed. p 2453
  6. ^ Korf, Bruce E. and Allan E. Rubenstein. 2005. Neurofibromatosis: A Handbook for Patients, Families, and Health Care Professionals.
  7. ^ ABC News: 50-Pound Face Tumor: One Man’s Nightmare. Retrieved on 200801-23.
  8. ^ Radford, S. (2008-01-11). Chinese man has surgery for 10kg face tumour. Retrieved on 2008-01-29 from

[edit] External links

133 thoughts on “NF CAFE

  1. Hi to you all,i have fibromyalgia and went to Gillan Anderson for an update(im a verry big fan 🙂 ),then saw your interview there.It touched me to the core,but was glad to undestand what nf was.As a GA fan i know the cause is close the her heart.With fibromyalgia we dont get stared at the same way you do,its an invisible disease but we suffer like you do.
    But god do we ever know the pain,isolation and mostly ignorance of other people,and gosh does that ever hurt.Because underneath it all we are all the same,human beings.Plain and simple,and some people tend to forget about that a lot.
    Wishing you all nice holidays and happy new year and if you do want more info on fibromyalgia here is the web site i chat in: . bye all and take care.

  2. Love the name, thanks scully571 for the post, lets us know that more and more ppl are reading, Reggie you are really do wonders, and this is a nice place to come and just blog about anything, have your tried to google or yahoo nf yet, wonder how long it will take for it to come up on the first page, so where is Shelly and Brian,

  3. Welcome Scully571. I hope you will visit often. Thank you so much for the email. I’m happy that I know it works because of what we all do. All of you that come to the site do just as much as I do. Let keep it going. Let get the stats up today and this day forward. Anytime you want to comment on anyone of the blogs that you for got to mention. Feel free to go to it anytime.

  4. Last couple times I called, she was out of the office. I think they be moving again beginning in 2008. The building she (TNFF) is in, are moving (the company). I will try again during the new week.

  5. Ty all for the nice welcome,i can say that i do love hot chocolate here.hehe
    And you are all welcome to the fms web site,it will be a pleasure to talk to you all on the chat.Till later bye bye

  6. When will the NF Cafe start serving sandwiches or other goodies to eat ? Anyway, one week left for Christmas, and want to say Merry Christmas to everyone before everyone that may be leaving for the holidays.

  7. It is 9:21 and I already had a couple of cups of coffee, hard at work (he he, I am on line), hope all is doing well, I like the idea about food, any good easy fast recipes one could justs throw together, grab a cup of ???? and get online at your favorite NF Cafe, talk about moveis or where ever the conversation blows, except I have to be careful at work, that door opens way to often, I don’t want to get caught by the right person lol. I check by later bye for now

  8. Shelley, who ever said I was getting anybody anything? Bah humbug!!! However, as an act of kindness and goodwill, I will be accepting gifts throughout the holidays!

  9. hey yall I dont know if Reggie said anything I dont see anything posted but I told him to tell yall cuz I did not think I would be on but I am having Knee surgery tomorrow I will try to let yall know how it goes

  10. well I am going for knee surgery today I will let yall know how it goes I am glad I am getting this done then my knee will be all better and wont hurt then I should be able to finally get some sleep LOL

  11. well Ia m back but getting around pretty slow right now but all is good my knee dont hurt no more and the surgery went very well and thank you for everything Shelley and Reggie you all are really great friends and you dont find that everyday now thats for sure

  12. Glad the surgry went well. I had 4 knee surgeries way back when…to slow down the growth of my right leg then to stop the growth so my left leg can catch up. Still cant figure how they knew that how much growth I had left in my legs. I know they ask how tall my dad was, brother, uncles, etc. Today hardly can tell there was a growth difference.

  13. Glad to hear you are doing fine, take it easy and I hope you have a speedy recovery, I go for my biopsy on my neck tomorrow, I am kinda scared, my mother-in-law had hers today, so now it is wait and see, I will get my test results back on Christmas Eve, She does not know when she will get hers back yet. Seems like if it aint one thing then it is another.

  14. Where does everybody live? I live in the Heights in Houston. I know Reggie lives in South Houston off of South Post Oak. Where do the rest of you live? Are you all from the Houston area?

  15. I live very far north of Houston, in Irving. It is next to Dallas. Come to the Camp For All, the next NF Family weekend in September 2008.

  16. Hi, I live Lake Conroe in Montgomery, Texas Do you know the area???? I like shopping The Woodlands Mall. Conroe does not really have much.

  17. I had my biopsy done today, my neck is somewhat sore, My mother-in-law, has her done yesterday, tomorrow I am going down to Galveston to be with her to get her results, I am praying and hoping that she get good results. I get my results back Christmas Eve. I am believing in the best, I wish everybody a verry Merry Christmas if I am not able to get back on line before then, I am not sure how busy right now everything is kind of up in the air. Merry Christmas to all.

  18. It’s too early. I’m going to get my coffee after my comments.

    Thank you Patricia, Merry Christmas to you and your family. I will be praying for you and your mother in law.

    Yo! Brian, how are you? I hope you are feeling better after the surgery.

  19. Adgiant I live in a little city outside of Houston called Deer Park its close to Pasadena and Reggie I am feeling ok still a little sore but other than that I am feeling ok and Merry Christmas to all

  20. Glad to hear you are ok. The sourness will go away in time. Until then you will just have to stay here with us on the blog. We like your company anyway so let have some fun. It’s Friday and you know what that mean? Pick on Lou day. Yes we do everyday but today it must be more the other days. 🙂

  21. Shelley, despite being many miles away via internet fiber optics then being further distanced by millions upon millions of other web-related chats and postings, your “FA-LA-LA-LA-LA” warbling unfortunately reminded me NEVER to come to this site without first having at least a couple cups of high-octane caffeine!!! My body nor my nerves were ready for this spontaneous outburst of unmitigated glee.

  22. I went to Specs last night and actually bought some. I love those hot, spicy ones with red peppers mixed in. They suck in martinis but are great just eating. Thank you, Shelley, for reminding me that I have those! You’re the best!!! : > )

  23. Merry Christmas. I see Santa Claus was by here, found some raindeer poop on my car. Anyway, its sunny and I think the temps to be in the 60s today.

  24. The TEXAS NEUROFIBROMATOSIS FOUNDATION moving its offices from the current location in Irving to down town Dallas over the Christmas holidays. Should be open on Jan. 2, 2008. I believe the new address will be 1717 Main Street Suite 1800 (hope they have a good view), Dallas, Texas 75021.

  25. well now that Christmas is over, I will give the news, My Mohter in Law Biopsy came back positive for pacriatic cancer it was kind of a shock, there is nothing that we can do. My came back negitive which is a relief it is kind of hard to be happy when I know there is no hope for her.
    On a good note my daughter has passed her first trimester in her pregancy, so that is good. I just ask that yall keep my mother in law in yall’s prayes. we are going to try to make what time she has left comfortable as possible.

  26. I think it will be a bigger office area. The company where the TexasNF Office was at, the company was growing but the building was not, so I think they had to move. I had not been or seen the new office area, but will need to make a trip after after the get moved in. I was four miles away, now, its going to be a outing for me to go.

  27. comment 118 I’m so sorry Patricia. You are doing the best thing. Make every day as happy as you can. It will be something you can always reflect back on. Spend as much time laughing and just enjoying each day you have with her.

  28. Tim and I Are friends from Goodwill. Many years ago. Now Tim has moved up and is doing well at Bed Bath Beyond. Keep up the good work time. Thank you for stopping by again. I will have to come and see you sometime.

  29. Pingback: Songs and Names » NF CAFE neurofibromatosis cafe

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