I have been through seventeen surgeries since my diagnosis in year 2002. Not only did it bring me a lot more tough challenges, it also introduced me new perspectives in life. It gave me opportunities to see the world and meet people from different cultures among other things. After all the difficulty I have faced managing my condition, I wish it can be easier for other patients to accept NF. Hence, I dedicate my website to raising awareness, in hopes that more people will be comfortable with it.
Neurofibromatosis(NF) is an illness of the nervous system. It causes benign tumors to grow in our body all our lives. There is currently no known cure for NF.
There are two distinct types of NF. Neurofibromatosis Type 1(NF1) and Neurofibromatosis Type 2 (NF2).
NF1 is the result of a mutated gene on chromosome 17. It causes benign tumors to grow on peripheral nerves, under and on the skin and growth of Cafe-Au-lait spots that can be disfiguring. Some people with NF1 also develop optic gliomas, skull base tumors, and tumors that grow deeper in the body. Children with NF1 are known to have developmental abnormalities such as learning disability and gross motor delay.
NF2 is a rare form of NF. It is the result of a gene mutation on chromosome 22, causing tumors to grow in the brain and spine. The hallmark of NF2 is the acoustic neuroma which grows on both acoustic(hearing) nerves to the brain. It causes bilateral deafness and inbalance prior to its removal. Multiple tumors along the spinal cord is inevitable. People with NF2 also develop tumors in or on the skin and CAL spots though lesser than people with NF1.
A newly discovered type of NF is Schwannomatosis. People with schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves–but they do not develop vestibular tumors and do not go deaf. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, schwannomatosis may vary greatly between patients. They also do not develop any other kinds of tumors (for example, meningiomas, ependymomas or astrocytomas) and do not have learning disabilities. For reasons not yet understood, people with schwannomatosis have problems with chronic pain that often exceeds their neurological problems.
NF is a very rare and unknown illness. NF2 alone affects one in every 40,000 births in the United States. Even so, it dread the lives of people suffering from it. Diagnosis may be a long way because not all doctors are experienced enough especially in developing and under-developed countries. The first synthoms of NF usually appears during teenage- a time when one is most vulnerable. Early detection is essential in minimising the effects of NF.
More lives can be eased If the public is educated about NF.
Here goes some brochures distributed for free by the The Children’s Tumor Foundation.
||Questions & Answers
The pamphlet provides answers to the most commonly asked questions about NF, including:
|What is NF?
What forms does NF take?
How common is NF?
How in NF inherited?
What are the symptoms of NF?
What are the early signs of NF?
How does NF affect the brain?
|Can NF develop into cancer?
How does NF affect a person’s physical appearance?
Does NF remain stable over a lifetime or does it get worse with age?
Can NF be cured?
If a child has NF what should you watch for?
If people suspect they have NF who should they contact?
What research is currently being done on NF?
||Neurofibromatosis Type One: A Guide for Educators
This 12 page booklet is written in question and answer format and provides concise and practical information and recommendations about the cognitive, behavioral and physical manifestations of the disorder. It was developed by Dr. Bruce Korf, a neurologist at Harvard Medical School.
||Living with NF Type 1: A Guide for Adults
This pamphlet was written to provide information specifically for adults with Neurofibromatosis Type 1. It was written by Linda Piersall, M.S., David H. Gutmann, M.D., Ph.D., and Rosalie ferner, M.D., F.R.C.P. It is published by The Children’s Tumor Foundation.
||Facing Neurofibromatosis: A Guide for Teens
This booklet has been written to explain what is known about neurofibromatosis, and what can be done to help deal with it. It was developed by Dr. Bruce Korf, Gretchen Schneider, M.S. and Diana Platt Frenkel of the NF Program at Children’s Hospital, Boston.
||Achieving in Spite of…A Booklet on Learning Disabilities
Designed for use by parents, teachers and health professionals, this 34-page booklet includes information on what learning disabilities are and what to do about them.Co-authors, Dr. Constance Veaco Dilts, University of Utah Medical Genetics Program; Salt Lake City, Utah – North Clackamas School District; Milwaukie, Oregon, and Pamela Bellermann, in conjunction with the Advisory Board Members of the Maniet Bellermann Foundation, Inc., define a learning disability as a short circuit or dysfunction in one or several of the channels through which information gets to the brain – visual, auditory or tactile input.
||Neurofibromatosis: Information for Patients and Families
This booklet is intended to answer your questions about neurofibromatosis (NF). It is published by The Children’s Tumor Foundation in response to multitudinous requests from individuals with NF, their families, and the professionals who care for them. It was written by the Foundation’s Medical Director, Dr. Allan E. Rubenstein, and its past Executive Director, Felice Yahr, MS.
||The Child with Neurofibromatosis Type 1
This brochure is dedicated to the families who live with neurofibromatosis, and their friends who help provide support and encouragement. It is the purpose of this brochure to attempt to place mild or early neurofibromatosis in perspective. To some extent, neurofibromatosis is an unpredictable condition and uncertainty is inevitable. It is hoped, however, that access to accurate medical information will make this uncertainty easier to live with and understand.
||NF2: Information for Patients & Families
This pamphlet was written to provide information on Neurofibromatosis Type 2 (also called bilateral acoustic neurofibromatosis or central neurofibromatosis). It was written by Dr. Mia MacCollin, Dr. M. Priscilla Short and Catherine Bove, R.N. Med. of Massachusetts General Hospital. It is published by The Children’s Tumor Foundation.
Schwannomatosis shares many features of the neurofibromatoses, and may be viewed as another form of neurofibromatosis. Much less is known about schwannomatosis than about NF1 and NF2, however. Current evidence suggests that schwannomatosis is associated with alteration of a gene that is distinct from the NF1 and NF2 genes