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).

Neurofibromatosis Type-I

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.

Neurofobromatosis Type-II

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


Claire E. Burns · September 1, 2005 at 1:54 am

where can I obtain c aopy of questions and answers – I have been diagnosed with NF 1

Joey · September 9, 2005 at 9:59 pm

Hi there, I’ve read about your condition in my friend’s blogs, but sadly, I have limited resources to offer, but I do wish to ask you to try if tai chi can cure this, because taichi re-regulates the flow of blood, and this will hopefully cure the tumor…

Yvonne · September 12, 2005 at 9:48 pm

Claire U can click on the image and download it from here.

Joey I tried taichi but I’m not physically active. Maybe sometime, I should resume the exercise. Thanks for the comment!

Apasaja · September 17, 2005 at 10:01 am

I admire your courage in facing up to the pains and sufferings; and in the course of this reach out to educate more people about this dreaded disease. I for one have gained some idea of NF.

Regretfully, for one who is a non-medical person, I cannot offer any positive advice. Hopefully, though, prayers on my part will offer some spiritual comfort and a road to recovery for you.

May you be able to keep yourself well and happy always…

Sumana Sing · September 17, 2005 at 9:45 pm

Hi Yvonne,

Keep up with your fighting spirit!

I am in the nutritional industry in Malaysia. I do wish to be of help to you to alleviate the pain you’ve got to bear with this disease but it may be something you could try for a month or two.

I have helped a few cancer patients, 2 of them who were serious cancer patients and today they are alright with their illnesses.

1) Ramli had 2 weeks to live when he was wheeled out and discharged from the hospital with A-Grade morphine, suffering from end-stage nose cancer. The cancerous lump stretched from his left ear and hung from his nostril. He was given a few products, Daily Produce 24(a bottle of 12 fruits & a bottle of 12vegetables) and ChloroSpirulina, 4 of each type every 4 hours and a week later with another product – Native Legend Tea, a special proprietary blend of the very well known Eissac Formula which had saved thousands of terminal cancer patients, twice daily. Every now and then was also given Hawaiian Noni and Chlorophyll. Three weeks of consuming these few products, Ramli walked into the oncologist clinic and his oncologist was stunned. After several tests and checks, he gave Ramli another 3 months to live. That was in November 2004. Today Ramli is still alive. In fact the oncologist was so stunned that he summoned 7 other doctors to view this patient, Ramli. Ramli was healthy enough to go back to his work the following week.

2) Miss Suryansyah was suffering from leukemia. After taking Daily Produce 24 and ChloroSpirulina, 4 of each type every 4 hours and after 4 weeks of consuming, her blood test showed red blood cells and white blood cells are back to normal.

** All the above products are from Unicity. Daily Produce 24 is listed in the Physician Desk Reference 2005 Edition (Drugs & Medication Copy) widely used by doctors and health professionals in US.

This book….’What Your Doctor Do Not Know Of Nutritional Medicine May Be Killing You’ by Ray Strand, MD is an eye-opener.

Warm Regards
sumana sing

sergius tang · September 19, 2005 at 3:37 am

hi yvonne i understand your suffering. I am seeing a friend through stage 2 malignant brain tumor. this friend of mine is on a product called Transfer factor. his tumor shrunk by 18% after being on the product for 2 months. i am suprised that no physician has recommended it to you yet. but anyway i’m not sure how to tell you this but it is a direct selling compnay. the product really works and it is very famous in the medical community. pharmacies are selling it even drs in kl are prescribing it . please do have a look into the product and go for the talks which they hold on mondays at the am corp tower. i’m not sure when but it’s on the 5th floor. you can probably go check at the company reception oh yeah the company is called ForLife research. They work on the concept of giving your immune system the knowledge and education thus allowing your natural killer cells a more effective method of killing of the tumors in your body. do give it a try go have a listen to the talk … amcorp mall FOR LIFE office 5th floor

god bless

charlie stockett · October 4, 2005 at 2:49 am

I have 44 year old male with NF1 and have had 28 surgeries. I just go day to day and get them cut out as they come up.Mine have all been under the skin surface. I have not had any in a couple years and am just now getting to where I can speak of it. I also had a stroke in Feb 2005 and am trying to get better. I wish you all the best.

Darlene · October 14, 2005 at 2:44 am

I am a 40 Yr old female with NF1. I have been going through many doctors to get to the bottom of my last episode. I was at work and passed out. I have had 5 MRI’s, 2 cat scans, about 20 EKG’s, 1 EEG and 1 Echo Cardiogram; “they” doctors seem to think an NF tumor or tumors might be the cause of it, but basic doctors in my hometown,lack the knowledge. I was finally sent to a neurologist. Hopefully now, they can pinpoint my centeralized head pain. Also in September 2001, I had my right kidney removed; and I truely believe an NF tumor was the cause of that. Although, the doctor “assured” me those types of tumors don’t grow like that. Hmm not what the newest doctors are saying. I try to read all I can. I appreciate and respect people posting on blogs, and threads on the interent.
I have 2 children, and only 1 of them have NF1. Had I been educated earlier, I might have adopted. I love my kids and thank God for them.
I have educated my child with the NF that he has a 50% chance to pass it on. Hopefully 1 day there will be a cure. EVERYONE be Blessed.
– Darlene – dahls@wcoil.com

lydia · November 2, 2005 at 2:58 pm

be strong girl…don’t give up on life’s battle,before us laid us our lives like the squares of a quilt in many piles…may all our quilts be threadbare & worn,allowing christ to shine through..may god god bless u richly..24/7…..

Darlene · November 10, 2005 at 6:11 am

Greetings all …. We’ve come closer to answer of my episode I ahd earlier in September 2005, which landed me in the hospital. I just had surgery to remove 3 neurofibroma tumors on my right arm. My Doctor was excellent. I have several other rather large ones, that I will get removed at a later time. These 3 were a bit painful at times, and it was my dominant hand. I hope all of you have been in good health, love and spirit. Well I need to go for now, getting tired and I snuck to get on here my hubby would have a cow, today is Wednesday, and I just had my surget on Monay. God Bless Ya’ all and take care/ – Darlene- dahls@wcoil Use subject line as: NF 1

Dawn · November 16, 2005 at 9:14 am

I am a 40 year old woman with Schwannomatosis. All of my tumors have been in my right leg (mostly lower leg). I have had 5 surgeries to remove the most painful tumors. My doctor estimates that I have over 100 tumors in my right leg. I am just thankful that it is not life threatening. The hardest part is living with the pain that is associated with the tumors. I did have an MRI done today to rule out any spinal tumors…I feel confident that the scan will come back OK.
May God Bless each and everyone of us that has to deal with NF in any form!

Peggy Hetrick · November 21, 2005 at 6:46 am

Hello,I am a mother of a beautiful 20 year old daughter,She has NF1 and NF2.She has had 5 Brain surgeries to remove Menengiomas,Acoustic Neuromas,Optic Gliomas and 3 surgeries to remove spinal tumors.She is Blind and Deaf and can hardly walk on her own due to NF.She is now Terminal with only months to live,but her will to live is strong.She has been through alot,but still lives each day to the fullest.She is on Morphine to keep her pain at a comfortable level.I just want to say that each day of my daughters life has been a treasure and I feel so blessed to have her in my life.Neurofibromatosis is a devastating disease for the person afflicted and I hope for a cure soon.God Bless everyone who is affected by Neurofibromatosis.

Sonia · December 2, 2005 at 1:17 pm

hi…well, i came 2 know yvonne in the december issue of seventeen malaysia.i knew this illness since i was 11 when my grandfather was hospitalized for a month.many patients were suffering.some even had tears rolling down their cheeks.i saw their pain.i noticed that they were praying extra hard…so that God will give them some light, to light up their darkest nightmare.yvonne, u r a strong girl.always remember, miracles happen in everyones life.tell neurofibromatosis”I M NO GOING TO LOOSE TO YOU.I M A WINNER, A STRONG WINNER!”to all who have the same illness, do the same.you are a beautiful soul who fight till the end.and for those who are healthy, treasure it.do yourpart.HELP THEM, SUPPORT THEM.thank you.

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