:: Ear Health Screening for Neurofibromatosis Patient ::

Few days back i went for a hearing screening test.
So far, my hearing is good at the normal scale. Later i insist to meet the doctor in charge.

I meet the doctor by the name Dr Lim from Assunta Hospital.
I told him i need to check my ear as i'm a NF patient. He put a smile on his face and he said "Wow....really? Do you have any fibroma on your body?"
I show him the one on my hand. He smile again.

Everything was fine. And he advice me to check my ear every year.


Dulu tak ramai tahu tentang Neurofibromatosis ni...some doctor also didn't know about this. But i'm glad there are afew that really alert about NF.

Come let's spread the word with me!

:: Propolis ::

So i've been told that propolis can decrease or slow down the growth of fibroma....
Today, a friend bought me this..




Hopefully there will be a cure for NF patients like me and the rest of us

Sakit tak kalau ada Neurofibromatosis?

Saya sendiri tak tahu nak cakap samada sakit atau tidak.
Mungkin dari segi fizikal saya atau anak saya nampak ok. Tapi kadang-kadang moral down juga.
Kita tak sama macam orang lain.

Saya ada satu benjolah keras dibahagian lengan yang saya perhatikan semakin hari semakin mengeras. Silap saya tidak bertemu dengan pakar sewaktu pertama kali saya diberitahu saya ada NF.
Waktu itu saya fikir ia cuma 'angin' dalam urat. Tapi saya rasa saya silap.

Longgokkan daging 'lebih' dibahagian belakang badan saya pun semakin hari semakin memberat.
 Saya agak mati akal sebenarnya tak tau apa nak buat.

Saya dah ambil keputusan untuk bertemu dengan doktor saya pada masa terdekat untuk dia buat surat rujukan yang saya boleh refer ke HKL.

Wish me luck.

Neurofibromatosis petition to be sign by all

Dear All,
Kindly help us to sign this petition. Tq CLICK HERE

:: Natural Remedies for Neurofibromatosis ::

Neurofibromatosis is a genetic disorder, also called the von Recklinghausen disease, after the researcher who has documented it.

Although it is hereditary and there is no cure for it, we have found some natural remedies for neurofibromatosis, but ONLY for the simple phase in which you are confronted with skin pigmentation.

So, make sure you follow these simple natural remedies for neurofibromatosis only if you suffer from a mild form of skin spots also called café au lait spots.

So, in order to alleviate the skin spots caused by neurofibromatosis you’ll need to follow an external treatment as follows:

• make a mixture of 40% water, 40% apple vinegar and 20% honey
• pad the spots on your skin with this solution 2-3 times a day
• right before bedtime pad the spots with propolis tincture and then anoint them with Nikeprop ointment (a natural ointment made of propolized black bryony) without massaging.

Also, this natural remedy implies also an internal treatment that goes like this:

• have 1 teaspoon of pollen 20-30 minutes before breakfast and dinner
• have 2 teaspoons of honey mixed with royal jelly
• have a mix of 30 drops of propolis tincture and 30 drops of water
• after each meal have 1-2 teaspoons of propolized honey.

The next natural remedy for neurofibromatosis also applies for the café au lait spots that have extended on your skin. This remedy is somewhat more controversial and you might want to ask your doctor before following it.

However, some people claim that their spots have gone away in only 3-4 days after they started the remedy.

• All you need to do is to rub your spots with burnt engine grease, because this is a wonderful vegetal produce.
• Yes, you’ve heard me, that thing that you smear the car engine with and you need to clear every once in a while because it gets burnt.
• You’ll begin to see your spots start to discolor.

However, these days they use chemicals to better the car oils formula, so before you get your hands on the ball of grease, make sure it doesn’t contain any chemicals, but the vegetal component to it.

Also, try it first on a small surface and see if it works for you, before rubbing it to your entire body. We really hope that you’ll find this remedy really useful and you’ll regain that beautiful skin of yours.

These are the natural remedies for neurofibromatosis that we propose to you and make sure you use them if you found yourself in a mild form of skin pigmentation due to neurofibromatosis, because it won’t work for other symptoms of the disorder.

sumber : http://www.mynaturaltreatment.com/natural-remedies-for-neurofibromatosis/

:: Love someone with NF? ::

:: Me & NF ::

Hi there....
I'm a NF type 1 patient.
The first time that i actually knew that i'm had NF1 was back in 2012. Seriously, i had no clue about what is NF until a doctor ask me a question. "Awak ada neurofibromatosis ke?"
and i was like ".............................................what?"

Yes, i do have. Cafe Au Lait almost all over my body. And Yes, i do have 'lumps' here and there. I though it was some sort of chicken pox scars. But i was wrong. It is actually a neurofibroma.

My age when i was diagnose with NF? 30.
The first time i saw the lumps? Back when i was 15 soon as i healed from my chicken pox.
Yearsssssssssssss before. I had this HUGE lumps on my back. A doctor from a clinic said that nothing to be afraid of and nothing to be worried of. But this NF is like a "silent killer" to me.

I was confused at the first time. But....now, I redha.

>To be Continue~

:: Neurofibromatosis bukan penyakit pelik! ::

Welcome back.
Untuk pengetahuan semua, 'ilmu' neurofibromatosis di Malaysia ni masih di tahap sangat rendah. Tidak ramai yang tahu apa itu NF!

Mungkin ramai yang tak peduli apa itu NF! Dan ramai juga yang merasakan NF ini adalah suatu penyakit yang MISTERI & PELIK!

Sebenarnya TIDAK, sekiranya anda semua ada pengetahuan asas mengenai apa itu NEUROFIBROMATOSIS!
Tak perlu jumpa bomoh segala kerana itu bukan jalan penyelesainnya!

Ya, NF masih tiada UBATnya. Kebanyakkan pesakit cuma ada 2 pilihan. Samada meneruskan kehidupan secara normal atau hidup dengan tekanan.

Tapi saya memilih untuk meneruskan kehidupan secara normal dan saya masih mempunyai self esteem yang tinggi.

Jujur saya katakan ada orang yang merasa JIJIK apabila melihat pesakit NF ini. Kami tidak minta untuk dilahirkan sebegini. Kami tak minta bintik dan bintat itu untuk berada pada tubuh kami.

Di sini saya akan kongsikan beberapa gambar pesakit neurofibromatosis. Apa yang kami perlukan adalah moral support dan bukannya 'EEEEEEEEEEEEEEEEEEEEEEEEEE!'

Lumps/benjolan berasal dari ini :

 benjolan/bintat2 kecil

ke ini  ia boleh membesar dan berubah warna dan bertambah


ke ini  ia boleh meliputi keseluruhan badan serta muka


di atas adalah antara gambar-gambar penghidap NF. Kebanyakkan penghidap NF1 hanya mempunyai benjolah-benjolan di luar kulit sahaja manakala NF2 mempunyai 'tumor' di bahagian dalam tubuh sehingga boleh mencacatkan penglihatan atau pendengaran.

Bagi saya ianya adalah satu penyakit yang perlu dicari UBATNYA.
Dan ini adalah salah satu tujuan mengapa saya mewujudkan blog ini.

Please FIND a CURE for us, a NEUROFIBROMATOSIS patient(s).

:: What is Neurofibromatosis (NF) ::

Neurofibromatosis, also known as NF, is a genetically inherited disorder of the nervous system (brain and spinal cord) which mainly affects the development of nerve (neural) cell tissues, causing tumors (neurofibromas) to develop on nerves, and may cause other abnormalities. The tumors may be harmless, or may compress nerves and other tissues and cause serious damage. In some rarer cases the tumors may become cancerous. 

Neurofibromatosis affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Elements from these cells proliferate in excess throughout the whole body, resulting in the formation of tumors, and abnormal function of melanocytes, causing disordered skin pigmentation. Melanocytes are pigment-producing cells in the skin, hair and eye that determine their color. The tumors may also cause bumps under the skin, colored spots, bone problems, pressure on spinal nerve roots, as well as other neurological problems. 

Neurofibromatosis may affect the bones, causing severe pain. Some patients experience learning disabilities, behavioral problems, and vision and/or hearing loss. There is no cure for the disease. 

Neurofibromatosis describes two entirely different diseases, as well as a much rarer form, with different causes that have similar features:

§  Type 1 neurofibromatosis (Nf1) - or von Recklinghausen's disease, von Recklinghausen NF, or peripheral neurofibromatosis. It is transmitted on chromosome 17 and is mostly caused by mutation (rather than deletion) of the Nf1 gene.

Shortly after birth several birthmarks (hyperpigmentation) may appear in different parts of the body. During late childhood cutaneous lesions (tumors on the skin) and subcutaneous lesions (tumors under the skin) may appear, from a few to thousands. There is a slight risk that the tumors become cancerous.

For some patients this is presents no serious medical problems apart from a skin condition. However, complications are possible, and sometimes serious.

§  Type 2 neurofibromatosis (Nf2) - or bilateral neurofibromatosis. It results mainly from a mutation (rather than a deletion) of the Nf2 gene and is transmitted on chromosome 33.

Tumors form in the nervous system, generally within the skull, known as intracranial tumors. Tumors also develop in the spinal canal, known as intraspinal tumors. Acoustic neuromas are common - these develop on the vestibulocochlear nerve (the eighth cranial nerve). The vestibulocochlear nerve is responsible for our sense of hearing; it is also important for our sense of balance and body position. Patients may experience hearing loss, as well as losing their sense of balance. Symptoms tend to occur during late teens and early 20s. Tumors may also become cancerous.

§  Schwannomatosis - this is a much rarer form of neurofibromatosis that has only recently been recognized. It is genetically distinct from Nf1 and Nf2. According to the National Institute of Neurological Disorders and Stroke, USA, schwannomatosis accounts for about 15% of the inherited forms of neurofibromatosis. Patients develop schwannomas (tumors in the tissue around a nerve) anywhere in the body, except for the vestibulocochlear nerve (the nerve that goes to the ear). The tumors can cause severe pain, numbness, tingling, and/or weakness in the toes and fingers. Patients do not develop the neurofibromas seen in Nf1 and Nf2.

Researchers have identified a mutation of the SMARCB1/INI1 gene that is linked to the familial form of the disease. However, nobody yet knows what causes the severe pain which is typical in this disorder.