Has anyone ever heard of neurofibromatosis before?
471293
It is amazing how prevalent a disease can be, and yet so unknown. Neurofibromatosis (NF) is the most common neurological disease caused by a single gene. Both forms, NF1 and NF2, affect more than 100,000 Americans. The Children’s Tumor Foundation Web site (www.ctf.org) says “this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.” While there is no known cure for NF, and it’s various forms, research is working toward an effective treatment.\n\nThe goal of this site is to create a local communication center for people with NF, as well as medical providers. Soon new features will be added, such as chat rooms and forums to encourage communication between the people involved. please check back often and help us grow.
376893
Yes, I've heard of it on the news... ask your doctor
105436
*Shaking my shaggy skull* Sadly no as it is a chromosomal disorder, modern science has not advanced that far.\n:c(\nWolf-Hirschhorn syndrome is an extremely rare chromosomal disorder caused by a partial deletion (monosomy) of the short arm ("p") of chromosome 4. Major symptoms may include extremely wide-set eyes (ocular hypertelorism) with a broad or beaked nose, a small head (microcephaly), low-set malformed ears, mental and growth deficiency, heart (cardiac) defects, and seizures. Because the amount of genetic material deleted varies, the symptoms of this syndrome vary from case to case.\nTreatment is cosmetic mostly in nature. Treatment of Wolf-Hirschhorn Syndrome may include surgical repair of malformations. For example, surgery may be performed to correct cleft lip and palate. Other treatment is symptomatic and supportive. A team approach may be helpful in ensuring that affected individuals reach their fullest potential. Such a team approach may include special remedial education, physical therapy, and other medical, social, or vocational services. Genetic counseling will also be of benefit for families of children with Wolf-Hirschhorn Syndrome.\nIn the future with the advance of genetic sciences perhaps we can find cures that will do things like repair DNA and chromosomal disorders. http://www.hhm.k12.nf.ca/parsonsbio/bioproject/cure.html\nStem Cell research was making interesting progress along those lines until recently.\nThere are currently 26 labs in the US alone studying WHS\nSome resource links are as follows\nhttp://www.madisonsfoundation.org/content/3/1/display.asp?did=230\nhttp://www.webmd.com/hw/raising_a_family/nord622.asp\nhttp://hw.healthdialog.com/kbase/nord/nord622.htm\nhttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Wolf+Hirschhorn+Syndrome#\nhttp://www.hhm.k12.nf.ca/parsonsbio/bioproject/WolfHome.html
599101
You are freaking me out! I didn't see that particular episode, but the show IS usually medically accurate, so I assume that this can really happen.\nHowever, it is probably extremely rare.
862850
Ive heard of kids divorcing their parents before which just sounds a bit wierd to me. But im sure ive heard it somewhere!
88079
I suggest you ask your physician to refer you to a Geneticist, or you might find good info at the following:\n\nhttp://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm scroll down and you'll find more links.\n\nhttp://neurosurgery.mgh.harvard.edu/NFR/ this is a Harvard/MGH site scroll down and you'll find a Genetics link. \n\nI don't think you are going to get an expert opinion on Yahoo Answers. Hope you realize that most people just Google this stuff and aren't geneticists. This question is "hard to understand" because MOST people have never heard of Neurofibromatosis or von Recklinghausen's disease. And of course you'll get stupid answers...look who you are asking!
1095180
I never heard of this?\n\nLC
447975
Yes. its a common problem. the clinical term in spidermanoroism. The effects can be intense and sohrt lived, or not so severe and prolonged. in some cases it has been know to lead to sticky fibre scresion from varuious pourous parts of the body
511414
No ive never heard of this before. I spose it is possible though
923831
im not sure but it sounds interesting,\nnever heard of it.
698262
I'm not a doctor but the skin discoloration and balance issues can be a sign of neurofibromatosis.\n\nhttp://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm#What_is
681489
Neurofibromatosis is a single gene (autosomal dominant) genetic disease.  \n\nThe most common type is Von Recklinghausen disease (Neurofibromatosis type I) which is associated with a single mutation on chromosome 17.\n\nNeurofibromatosis type II is associated with a mutation on chromosome 22.\n\nThe fact that phenotype and genotype do not match in a lot of neurofibromatosis cases suggests a multi-factorial (or polygenic) etiology, but there is no solid data to confirm this theory.
666638
no, never heard of it, think its a scam\n\ndef a scam, found this website with a copy of the email
959966
Never heard of it before...
776590
No.  My brother had it twice as a toddler & it was spinal meningitis too.  I wasn't very old & don't remember much.  All I know of it is what's been told to me by family members.  He almost died both times he had it.\n\nMy brother had dark circles under his eyes the second time, which the doctor mistook for black eyes & called CPS (Child Protective Services) on my mom.  I vaguely remember this lady coming into our home & looking into the cupboards, the fridge, checking the stove, the washer, the dryer & the backyard.  Case was closed a few days later.  What the dark cirlces were from was a milk allergy.  My brother was allergic to cow's milk & we had to buy Mocha Mix & Carnation evaporated milk for him to drink.  I used to sneak drinks of the Mocha Mix in a small cup when no one was looking.  Now he's not allergic to anything.  Weird is what I say & probably a misdiagnosis.
563205
Wow no I have never heard of that. I think as the other user suggested, you should definitely seek a second opinion (outside that hospital, a completely different specialist) before proceeding with this radical treatment. Good luck honey!
1089717
No, and I haven't even heard of it. But, I'll be watching to see the replies....\nBut, you can try http://www.tjed.org/ Maybe you can get help there.