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WELCOME!! June 20, 2009 10:28 AM

Hi Amy. Welcome to the group. Things have been slow here lately and I take full blame for it. Please tell us about your fight with nf. There are people here like Stanley that can relate. Don't be a stranger here. We want to know as much about you and your experiences as your comfort level allows. No pressure here. Thanks for joining!!!

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nf June 10, 2009 3:19 AM

hi, i also have nf, can I join the support group?

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NEUROFIBROMATOSIS February 24, 2008 8:19 AM

Hello ya'll. It's me AGAIN. I started a support  group here on care2. lots of Info.. If anyone is interested. the link is: Take a look, maybe join & add your  own words of wisdom. PEACE: http://www.care2.com/c2c/group/NF  [ send green star]  [ accepted]
 
 January 11, 2008 11:14 PM

Hi Denise!

Thanks for joining. I think the best teachers are the patients. We can learn a lot from you concerning the illness and how you cope with pain etc. I'm really glad you are here. Please post and let us know about whatever you are confortable talking about.

 [ send green star]
 
Hello! January 11, 2008 6:06 PM

My name is Denise, I am not a nurse or doctor, but have always tried to keep informed in the medical world.

I have severe scoliosis, the big "S". Been through all the milwaukee brace crap, surgeries and body casts and morphine and hospital stays I can handle, lol. I'm 53 now and dealing with the pain with out taking the pharm meds anymore. I have to take enough pills, as it is for, my other health issues recently discoved this year.

I read through the meth thread. WOW! What a great thread for sooo much information!

I will go for now, but will be looking around and I promise to post.

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NEUROFIBROMATOSIS September 26, 2007 11:18 AM

Elephant Man Disease

Neurofibromatosis is the genetic disorder that has come to be known as Elephant Man disease. However, according to the July 25, 1987 issue of Science News, Neurofibromatosis was probably not the cause of the Elephant Man's deformities. Instead, it was the consensus of a 1987 National Institutes of Health panel, that Joseph Merrick--the 19th-century "Elephant Man' who later became the subject of a popular movie and play--actually suffered from an extremely rare disease known as the Proteus syndrome.

Source: "As of '87, he's Proteus Man. (Elephant Man found to have suffered from Proteus syndrome)", Science News, July 25, 1987, v132 , p. 55.

Verified by: GM, 5/98

Disclaimer:
While the Library has verified the information presented in these files in what it considers to be reliable and authoritative sources, it cannot take responsibility

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NEUROFIBROMATOSIS September 25, 2007 2:28 PM

THINK IT'S HARD TO SAY? TRY LIVING WITH IT. Dayafterdayafterdayafterday...............................  [ send green star]  [ accepted]
 
NEUROFIBROMATOSIS September 25, 2007 2:20 PM

Diagnostic Criteria for NF-1

Two or more of the following: *

  1. Six or more café-au-lait spots 1.5 cm or larger in post-pubertal individuals, 0.5 cm or larger in pre-pubertal individuals
  2. Two or more neurofibromas of any type or one or more plexiform neurofibroma
  3. Freckling in the axilla or groin
  4. Optic glioma (tumor of the optic pathway)
  5. Two or more Lisch nodules (benign iris hamartomas)
  6. A distinctive bony lesion: dysplasia of the sphenoid bone or dysplasia or thinning of long bone cortex
  7. A first-degree relative with NF1

*Click an underlined symptom to view its illustration (image will appear in a new browser window). Images provided by the Harvard Medical School Center for Neurofibromatosis and Allied Disorders.

Effects of NF-1

Neurofibromatosis type 1 (NF-1) is an autosomal dominant genetic disorder that causes tumors to grow on the covering of the nerves anywhere in the body at any time. The disorder affects 1 in 3,000 males and females of all races and ethnic groups. The NF-1 gene is located on chromosome 17.


 
Diagnostic Criteria for NF-1

Two or more of the following: *

  1. Six or more café-au-lait spots 1.5 cm or larger in post-pubertal individuals, 0.5 cm or larger in pre-pubertal individuals
  2. Two or more neurofibromas of any type or one or more plexiform neurofibroma
  3. Freckling in the axilla or groin
  4. Optic glioma (tumor of the optic pathway)
  5. Two or more Lisch nodules (benign iris hamartomas)
  6. A distinctive bony lesion: dysplasia of the sphenoid bone or dysplasia or thinning of long bone cortex
  7. A first-degree relative with NF1

*Click an underlined symptom to view its illustration (image will appear in a new browser window). Images provided by the Harvard Medical School Center for Neurofibromatosis and Allied Disorders.

Effects of NF-1

Neurofibromatosis type 1 (NF-1) is an autosomal dominant genetic disorder that causes tumors to grow on the covering of the nerves anywhere in the body at any time. The disorder affects 1 in 3,000 males and females of all races and ethnic groups. The NF-1 gene is located on chromosome 17.


 
  Neurofibromatosis, Inc.
  P.O.Box 18246
  Minneapolis, MN 55418

  Neurofibromatosis, Inc.
  P.O.Box 18246
  Minneapolis, MN 55418
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NEUROFIBROMATOSIS September 25, 2007 12:56 PM

Neurofibromatosis Type 1 (NF-1)
To purchase full-text report ($7.50): View Cart/Checkout

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.


Copyright 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1998, 1999, 2000, 2002, 2005



Synonyms of Neurofibromatosis Type 1 (NF-1)
  • NF-1
  • Recklinghausen's phakomatosis
  • Von Recklinghausen's disease
  • Von Recklinghausen's neurofibromatosis
  • neurofibroma, multiple
  • neurofibromatosis-pheochromocytoma-duodenal carcinoid syndrome
  • peripheral neurofibromatosis

Disorder Subdivisions

  • segmental neurofibromatosis


General Discussion
Neurofibromatosis type 1 (NF-1), also called von Recklinghausen's disease, is a rare genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas) and areas of abnormally decreased or increased coloration (hypo- or hyperpigmentation) of the skin. Areas of abnormal pigmentation typically include pale tan or light brown discolorations (cafe-au-lait spots) on the skin of the trunk and other regions as well as freckling, particularly under the arms (axillary) and in the groin (inguinal) area. Such abnormalities of skin pigmentation are often evident by one year of age and tend to increase in size and number over time.

At birth or early childhood, affected individuals may have relatively large benign tumors that consist of bundles of nerves (plexiform neurofibromas). Individuals with NF-1 may also develop benign tumor-like nodules of the colored regions of the eyes (Lisch nodules) or tumors of the optic nerves (second cranial nerves), which transmit nerve impulses from the innermost, nerve-rich membrane of the eyes (retinas) to the brain. More rarely, affected individuals may develop certain malignant (cancerous) tumors.

NF-1 may also be characterized by unusual largeness of the head (macrocephaly) and relatively short stature. Additional abnormalities may also be present, such as episodes of uncontrolled electrical activity in the brain (seizures); learning disabilities; speech difficulties; abnormally increased activity (hyperactivity); and skeletal malformations, including progressive curvature of the spine (scoliosis), bowing of the lower legs, and improper development of certain bones. In individuals with NF-1, associated symptoms and findings may vary greatly in range and severity from case to case. Most people with NF-1 have normal intelligence but learning disabilities appear in about 50% of children with NF-1.

NF-1 is caused by changes (mutations) of a relatively large gene on the long arm (q) of chromosome 17 (17q11.2). The gene regulates the production of a protein known as neurofibromin, which is thought to function as a tumor suppressor. In about 50 percent of individuals with NF-1, the disorder results from spontaneous (sporadic) mutations of the gene that occur for unknown reasons. In others with the disorder, NF-1 is inherited as an autosomal dominant trait.

The name "neurofibromatosis" is sometimes used generally to describe NF-1 as well as a second, distinct form of NF known as neurofibromatosis Type II (NF-2). Also an autosomal dominant disorder, NF-2 is primarily characterized by benign tumors of both acoustic nerves, leading to progressive hearing loss. The auditory nerves (eight cranial nerves) transmit nerve impulses from the inner ear to the brain.
.

Organizations related to Neurofibromatosis Type 1 (NF-1)
  • Alberta Neurofibromatosis Association
    Box12 Site10 RR3
    Alberta None T4T 2A3
    Phone #: 403--72-2-3389
    800 #: 866--93-9-2263
    e-mail: N/A
    Home page: N/A
  • BC Neurofibromatosis Foundation
    203-1001 Cloverdale
    Victoria, BC Intl V8X 4C9
    Phone #: 205--37-0-7597
    800 #: 800--38-5-BCNF (2263)
    e-mail: bcnf@bcnf.bc.ca
    Home page: http://www.bcnf.bc.ca
  • Baylor College of Medicine Neurofibromatosis Clinic
    Neurofibromatosis Clinic
    Houston TX 77030
    Phone #: 713-799-6103
    800 #: --
    e-mail: N/A
    Home page: N/A
  • Boston Children's Hospital
    Genetics Program
    Boston MA 02115
    Phone #: 617-735-6394
    800 #: --
    e-mail: N/A
    Home page: N/A
  • Cedars-Sinai Medical Genetics-Birth Defects Center
    Medical Genetics
    Los Angeles CA 90048
    Phone #: 310-423-9914
    800 #: --
    e-mail: N/A
    Home page: http://www.cedars-sinai.edu/genetics
  • Children's Hospital (Philadelphia) Fibromatosis Clinic
    Neurofibromatosis Clinic
    Philadelphia PA 19104
    Phone #: 215-590-2920
    800 #: --
    e-mail: N/A
    Home page: N/A  [ send green star]  [ accepted]
 
NEUROFIBROMATOSIS September 25, 2007 12:49 PM

Neurofibromatosis Type 1 (NF-1)
To purchase full-text report ($7.50): View Cart/Checkout

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.


Copyright 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1993, 1994, 1995, 1996, 1997, 1998, 1999, 2000, 2002, 2005



Synonyms of Neurofibromatosis Type 1 (NF-1)
  • NF-1
  • Recklinghausen's phakomatosis
  • Von Recklinghausen's disease
  • Von Recklinghausen's neurofibromatosis
  • neurofibroma, multiple
  • neurofibromatosis-pheochromocytoma-duodenal carcinoid syndrome
  • peripheral neurofibromatosis

Disorder Subdivisions

  • segmental neurofibromatosis


General Discussion
Neurofibromatosis type 1 (NF-1), also called von Recklinghausen's disease, is a rare genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas) and areas of abnormally decreased or increased coloration (hypo- or hyperpigmentation) of the skin. Areas of abnormal pigmentation typically include pale tan or light brown discolorations (cafe-au-lait spots) on the skin of the trunk and other regions as well as freckling, particularly under the arms (axillary) and in the groin (inguinal) area. Such abnormalities of skin pigmentation are often evident by one year of age and tend to increase in size and number over time.

At birth or early childhood, affected individuals may have relatively large benign tumors that consist of bundles of nerves (plexiform neurofibromas). Individuals with NF-1 may also develop benign tumor-like nodules of the colored regions of the eyes (Lisch nodules) or tumors of the optic nerves (second cranial nerves), which transmit nerve impulses from the innermost, nerve-rich membrane of the eyes (retinas) to the brain. More rarely, affected individuals may develop certain malignant (cancerous) tumors.

NF-1 may also be characterized by unusual largeness of the head (macrocephaly) and relatively short stature. Additional abnormalities may also be present, such as episodes of uncontrolled electrical activity in the brain (seizures); learning disabilities; speech difficulties; abnormally increased activity (hyperactivity); and skeletal malformations, including progressive curvature of the spine (scoliosis), bowing of the lower legs, and improper development of certain bones. In individuals with NF-1, associated symptoms and findings may vary greatly in range and severity from case to case. Most people with NF-1 have normal intelligence but learning disabilities appear in about 50% of children with NF-1.

NF-1 is caused by changes (mutations) of a relatively large gene on the long arm (q) of chromosome 17 (17q11.2). The gene regulates the production of a protein known as neurofibromin, which is thought to function as a tumor suppressor. In about 50 percent of individuals with NF-1, the disorder results from spontaneous (sporadic) mutations of the gene that occur for unknown reasons. In others with the disorder, NF-1 is inherited as an autosomal dominant trait.

The name "neurofibromatosis" is sometimes used generally to describe NF-1 as well as a second, distinct form of NF known as neurofibromatosis Type II (NF-2). Also an autosomal dominant disorder, NF-2 is primarily characterized by benign tumors of both acoustic nerves, leading to progressive hearing loss. The auditory nerves (eight cranial nerves) transmit nerve impulses from the inner ear to the brain.
.

Organizations related to Neurofibromatosis Type 1 (NF-1)
  • Alberta Neurofibromatosis Association
    Box12 Site10 RR3
    Alberta None T4T 2A3
    Phone #: 403--72-2-3389
    800 #: 866--93-9-2263
    e-mail: N/A
    Home page: N/A
  • BC Neurofibromatosis Foundation
    203-1001 Cloverdale
    Victoria, BC Intl V8X 4C9
    Phone #: 205--37-0-7597
    800 #: 800--38-5-BCNF (2263)
    e-mail: bcnf@bcnf.bc.ca
    Home page: http://www.bcnf.bc.ca
  • Baylor College of Medicine Neurofibromatosis Clinic
    Neurofibromatosis Clinic
    Houston TX 77030
    Phone #: 713-799-6103
    800 #: --
    e-mail: N/A
    Home page: N/A
  • Boston Children's Hospital
    Genetics Program
    Boston MA 02115
    Phone #: 617-735-6394
    800 #: --
    e-mail: N/A
    Home page: N/A
  • Cedars-Sinai Medical Genetics-Birth Defects Center
    Medical Genetics
    Los Angeles CA 90048
    Phone #: 310-423-9914
    800 #: --
    e-mail: N/A
    Home page: http://www.cedars-sinai.edu/genetics
  • Children's Hospital (Philadelphia) Fibromatosis Clinic
    Neurofibromatosis Clinic
    Philadelphia PA 19104
    Phone #: 215-590-2920
    800 #: --
    e-mail: N/A
    Home page: N/A  [ send green star]  [ accepted]
 
 September 08, 2007 2:49 PM

Thanks for joining Stanley! Let us know what ever you are comfortable in  telling us. What is a typical day for you? Coping mechanisms.............etc. I'm really glad you are here!!!

 [ send green star]
 
PEACE September 08, 2007 10:27 AM

HAY YA'LL: Thanks 4 the invite Brent. I'm not a nurse but I'm  disabled with NF. I work with your type daily.   What is NF? Neurofibromatosis. Peace- Stanley T.

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PEACE September 08, 2007 10:27 AM

HAY YA'LL: Thanks 4 the invite Brent. I'm not a nurse but I'm  disabled with NF. I work with your type daily.   What is NF? Neurofibromatosis. Peace- Stanley T.

 [ send green star]  [ accepted]
 
 April 02, 2007 8:12 PM

Hi Kat!! I'm REALLY glad you joined. I think nurses get most of our education from the patients. We can all learn from you. I hope you will be comfortable here and feel free to share as much as you like.

ok...................I'll take that hug now                

 [ send green star]
 
 April 02, 2007 2:17 PM

 Brent thank you for the lovely invitation. As you already know I deal with Fibromyalgia/CFS..& have found ways to manage it.....it's very refreshing to have a healthcare professional want to get a patients perspective & I so want to hug you right now, lol

This looks like a great group, hi everyone

 [ send green star]  [ accepted]
 
 February 16, 2007 10:59 AM

Christy............. WELCOME!!! It's a big state but a small world. I worked in an Alzhiemers unit too until they closed it down. They turned the unit into private rooms. More $ I guess. I loved it and became active with the Greater Dallas Alzhiemers Association up until this last year. I would love to work in an Alzhiemers unit again.  [ send green star]
 
Hello All February 15, 2007 1:04 PM

I  was browsing around and found this group.

I'm Christy, and I am an LVN. I work in a veterans home, on the Alzheimer unit.

Good to be here!

Peace,

Christy

 [ send green star]  [ accepted]

 
 May 09, 2006 1:19 AM

Welcome Marna and David.  You are joining just in time for "National Nurses WeeK", May 6th through 12th.  Please post freely.  We all look forward to your contributions. 

Hopefully, through sharing we can make our jobs less overwhelming, and stressfull. 

gentle hugs, dawn

 [ send green star]
 
Hello May 06, 2006 8:07 AM

I'm glad I found this group. I'll be starting clinicals in January. Will also be taking STNA in October. Glad to meet you all.  [ send green star]  [ accepted]
 
 May 05, 2006 8:33 AM

High every one so glad to have found this groupe hope to make friends with all off you. I started nursing after matricilation but did not finished. Looking back now I realised that I was scared of the responsibility. After that I worked as a credit controler, never enjouyed it. 5 years ago I desided I want to go back to nursing and am a stsff nurse now and never been happier, won`t ever do anything else again!!!!!! 

 [ send green star]  [ accepted]
 
 January 10, 2006 6:05 AM

nurse               

welcome

nurses

 [ send green star]
 
 January 05, 2006 2:22 PM

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Hi and thank you ....... March 18, 2005 7:55 AM

Hi All & Thank You for Joining Me! I retired from nursing partially for health reasons and partially because I found it impossible to raise my children as a single parent on a swing shift. I could have gone to an office setting to continue practicing 9-5, or go back to school. Either way I lost my seniority, and benefits by changing jobs. So, I earned my MSW and got both my kids through college. They are successfully employed adults. I have been hospitalized many times, and have cared for many family members while they were in the hospital too. What I find interesting is how attitudes change, within the institutions, toward family participation in patient care. It seems whenever staff gets short, it becomes acceptable to welcome family members in past curfew, and to help bathe and feed patients. But, when new staff gets hired (before the ones they are replacing start dropping from exhaustion), and quotas are being met, suddenly families are unwelcome. Most recently, my mother was hospitalized 4 times over the holidays for complications secondary to what was supposed to be a simple battery change in her pacemaker. The complications to the unit probably couldn't have been foreseen, and I believe that she got the best in routine OR care. However, she developed a blood clot that went undiagnosed because her doctor was on holiday in Israel for a month. Now she is on coumadin until at least April, maybe forever. In the meantime she was sent home with dysentery and unstable blood sugar. Her nurse assured me that the diarrhea was under control- it wasn't ; and they failed to warn me that they had been testing her blood sugar before each meal. She came home and crashed in the middle of the night with a level of 32. Her norm is around 185-190. She was trying to make it to the bathroom. This was the third trip to the hosp. When these issues were resolved and I was called to get her at the hospital, she was still in bed, with her hep-loc and Foley still in. I stood in the hall and shouted am I supposed to take her Hep-loc out too? I had been in every day to bathe her b/c the last time they sent her home with a terrible yeast infection in all of her skin folds from not washing her. Suddenly, her nurse, an inept model to say the least, popped out of no where and got busy getting my mother ready to go home. Just a few days later she fell in the bathroom and gashed the top of her badly. She refused to go back to the hospital, but she had a pretty bad goose egg. So, even though I got the bleeding to stop, she had to go and be checked out. This was a shorter stay, and with my complaining upon her admission she got much better care. But, why couldn't that be the standard? And, I know that nurses are overworked, and hospitals are understaffed. I have worked in them myself. But, why do we accept this level of care as the standard, both as the patient, and the caregiver?  [ send green star]
 
Thank you Ginger! March 17, 2005 9:37 PM

Thanks Ginger for joiniing, and thanks for the link. That IS funny. Living here in Texas, some of those medical terms aren't that far from the truth. I'm going to print that and take it to work. So, have you ever had a hospital stay that you can talk about? I don't ever want to put anyone on the spot, I'm just curious about peoples experiences with hopitals, doctors, nurses, etc. I never had surgery until 1999. I had my gall bladder removed. i had gall stones for a year before i did anything about it. The pain from gall stones was very extreme. I eventually got so sick that I called the doctor and he told me to meet him at the hospital. My liver enzyme levels were 100 times higher than they were suppose to be, so i was on an IV and no food for 2 days so they could get the levels back to normal. The surgery was laproscopic and took 45 min. I remember being in a room one min. and waking up back in my hospital room the next. i didn't need any pain meds after the surgery. i felt so stupid for waiting so long. I have seen several lap surgeries and they are really great. anyway, i went home the next day and could have gone back to work the day after that, but I stayed out for a week, just because I could.  [ send green star]
 
Thanks for the invite Brent... March 17, 2005 5:58 PM

Yes, thank you for the invite and sorry it took me so long to get here. I am not a nurse but sure could use one. lol. I am a terrible patient and not real groovy about doctors. I am the uneasy patient. But I know what you all do is for the good of us all. Well anyways here is a funny link because we all know darned well that laughter is tbe best medicine there is. http://txc.net.au/%7Emapie/hillbillymedicalterms.htm peace & blessings ---ginger  [ send green star]  [ accepted]
 
 March 16, 2005 12:04 AM

Hi Dawn! Thank you for being here. Did you have to retire because of health issues? You are too young to be a traditional "retiree". (Of course, you don't have to answer that if it's too personal) Do you think being a nurse makes it easier or more difficult to be a patient. I have found that nurses usually are bad patients, at least from the nurses point of view. What is even worse is having a patient who is related to a nurse. That sister or mother or brother knows everything and they can be very demanding. Can you talk about some of your disabilities? If not, that's fine. I just really appreciate you, and I hope we can build this in to a very active group.  [ send green star]
 
Great Idea.... March 14, 2005 6:53 AM

Thanks Brett for starting a network for Health Care professionals, and all others who are interested. I think that it's a great idea to give us a place to trade ideas, and vent. I am a retired LPN, and MSW/CSW. I also have many disabilities. So, I have experience on the other side of the aisle as well. I look forward to hearing the issues that others think are important, and urgent. I also look forward to discussing some of the problems that plaque health care. Maybe we can make a difference. dawn  [ send green star]
 
Welcome March 14, 2005 12:05 AM

Welcome to the Nurses Network. This group is for anyone who works in the medical profession, or anyone who has had any contact with someone in the medical profession. In other words, it is for everyone. Nurses can come here for support and advice from other nurses. But we all have had experiences, good and bad, with a doctor or a nurse. Let's talk about them. Any issue dealing with health care is fair game. By the way, I am a nurse, and I invite you to have a visit with my favorite doctor, Dr. Patch Adams. www.patchadams.org  [ send green star]
 
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