پیشگیری و درمان بیماری نوروفیبروماتوز Neurofibromatosis Treatment, Prevention

Neurofibromatosis Treatment, Prevention Treatment for Neurofibromatosis There is no cure for neurofibromatosis and the goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function In Type 2 neurofibromatosis, surgery using magnification and very small instruments (microsurgery) may be performed to remove tumors of the vestibulocochlear nerve When surgery cannot be performed without risking damage to nerve function, high energy x-rays (radiation) may be used to shrink tumors. Neurofibromatosis often results in psychological and social issues for patients and their families. Counseling and support groups may help patients cope with the disease. Neurofibromatosis Prevention منبع http://www.healthcommunities.com بیماری را نمی توان پیشگیری کرد. کسانی که سابقه خانوادگی بیماری را دارند ممکن است مایل باشند تا تست های ژنتیکی و مشاوره ژنتیکی انجام دهند تا مشخص سود ایا در معرض خطر برای انتقال بیماری برای فرزندان شان هستند یا نه. پیشگیری و کنترل نوروفیبروماتوز: یادداشت هایی از جلسه مشترک حامیان بیماران نوروفیبروماتوز با سازمان جهانی بهداشت منبع: بولتن سازمان جهانی بهداشت Prevention and control of neurofibromatosis: memorandum from a joint WHO/NNFF meetinghttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2393308 AbstractNeurofibromatosis (NF) is a serious, common, genetically determined neurological disorder; with a prevalence of about 1:4000 births it affects both sexes and all races and ethnic groups. The two major forms are referred to as NF1 and NF2, as suggested in 1987 by a National Institutes of Health Consensus Development Conference on Neurofibromatosis. In NF1, the disease phenotype is more variable and complex than in NF2. Complications can occur in any of the body systems in tissues of ectodermal, mesodermal and neural tube origin; there is marked variation of disease phenotype even within families. The NF2 gene, in contrast, only seems to be expressed in tissues of ectodermal origin and its expression is more uniform both within and between families. The recent discovery and isolation of the gene responsible for the NF1 mutation has practical applications in the field of molecular genetics which could modify the approaches for diagnosis, treatment and prevention of NF. This Memorandum summarizes the discussions and recommendations of the participants at a joint WHO/National Neurofibromatosis Foundation (NNFF) meeting, held in Jacksonville, Florida, USA, on 27-28 January 1991 نوروفیبروماتوز وقتی رخ می دهد که یک ژن ناگهان تغییر می کند. هم اکنون راه پیشگیری برای این بیماری وجود ندارد. در نوروفیبروماتوز نوع یک و نوع دو، والد با ژن غیرطبیعی پنجاه درصد احتمال دارد این ژن را به هر یک از فرزندان خود منتقل نماید. تست هایی را می توان در دوره بارداری انجام داد تا مشخص شود ایا جنین حامل این ژن معیوب است یا نهPreventionNF occurs when a gene suddenly changes. Right now, there is no way to prevent this disease. With NF1 and NF2, a parent with an abnormal gene has a 50% chance of passing it on to each of his or her children. Tests can be performed during pregnancy to determine whether a fetus carries the defective genehttp://www.sparkpeople.com/resource/health_a-z_detail.asp?AZ=619&Page=6 مرکز پزشکی دانشگاه مریلندhttp://www.umm.edu/ency/article/000847prv.htm مشاوره ژنتیک برای هر فردی که سابقه خانوادگی نوروفیبروماتوز دارد توصیه می شود. معاینه سالانه چشم پزشکی قویا توصیه می شود