HERO by Mariah Carey....in sign language

A foundation to establish

Dear friends and readers.

Here is the foundation's name that is under incorporation process. The foundation is for NF patients in Malaysia. However, the logo of the foundation is being edited in order to avoid legal action in future. Here is the edited logo.

The first stage of incorporating the foundation, ie, the name search process has been carried out. In order to proceed with the incorporation, we need to answer to SSM query, which includes RM1 Million pledge, the directors, the estimated income and expenses for 2 years after incorporation, a draft M&A and etc. SSM gave us one month to answer to the query.

Why need RM1 Million in pledge? It is a requirement by the SSM (Suruhanjaya Syarikat Malaysia) and the MOF (Ministry of Finance) so that more helps can be given later in the future once the foundation has been establish. The RM1 Million pledge can come from individuals, businesses or organisations.

Those who would like to contribute to the foundation, either an individuals or organisations are to write a letter saying that they agree to pledge certain amount to the foundation. Your letter will be attached together with the SSM query.

Once we have submitted the pledge letter and answer to the query letter, SSM will consider our application. Once it is approved, we will get in touch with the people who agree to pledge to the foundation and the money will then be banked in to the foundation's bank account.

If you wish to pledge and contribute any amount, do email me at syahidahishak@rocketmail.com. We need to submit it by 4th January 2013.

Thank you to you. Your continuous support and believe will helps many other patients in Malaysia battlling NF and living with NF.

Anakku Brain Tumor

Hello friends and readers.

Here is another book that I read recently. One of the reader post it to me (FOC). The book is written by the wife of popular group in Malaysia (Raihan).

I suggest you to read it in order to understand what is Brain Tumour. The book is available in Bahasa Malaysia only.

Cheers!!!

Telling It Staright

Hello friends and readers.

Just now, I attend a book signing ceremony by the author itself, which was located at MPH Subang Parade. The book is a compilation by the author itself from 2003 - 2012 and some of the articles was published in The Star.

I am reading the book and I suggest you all to read this book. 

 

Cheers!

Brain tumour?..Spinal tumour?..Neurofibromatosis...?

Hello friends and readers.

Here are some information's about neurofibromatosis. Hope it can help you to understand about neurofibromatosis.

Neurofibromatosis is complicated. It comes in many form and effect individuals differently. Yet, it is the most common disorder currently classified as a "rare disease".

Neurofibromatosis are classified as follows:

Neurofibromatosis type 1 (NF-1)

Neurofibromatosis type 1 (NF-1), formerly called von Recklinghausen's Disease or peripheral neurofibromatosis, is thought to occur in 1 of 2,500 births. The gene for NF-1 is on chromosome 17. NF-1 can be characterised by:

 

·         Multiple cafe-au-lait coloured spots on skin
·         Tumours of varying sizes on or under the skin
·         Lisch nodules on the iris of the eyes
·         Freckling in the underarm or groin area
·         Possible learning disabilities
·         Possible bone deformities, including scoliosis
·         Possible optic glioma
·         Possible family history of NF
·         Symptoms sometimes present at birth

 

Neurofibromatosis type 2 (NF-2)

Neurofibromatosis type 2 (NF-2 or bilateral acoustic NF) Is estimated to occur in 1 of 30,000 births. The gene for NF-2 is on chromosome 22. NF-2 can be characterised by:

·         vestibular schwannomas on both hearing nerves, often resulting in hearing loss and/or balance problems

·         cataracts or other visual problems at an early age
·         symptoms can appear as early as 2 years, but usually during or after puberty
·         other tumours of the central nervous system including the brain and spinal cord tumours of the skin.

 

Schwannomatosis

Schwannomatosis is the most recently recognised form of neurofibromatosis. It causes multiple schwannomas (nerve sheath tumours) to form on the central nervous system and chronic pan. No tumours on the vestibular nerves (as in NF-2) are evident.

The onset of symptoms is usually at puberty or older for both males and females. The precise genetic mechanism of schwannomatosis is unknown at this time.

 

Thank you very much to you

Hello friends and readers.

I feel bless this morning. In fact, everyday! I must be thankful to Allah for all the times, the moments that I have now, which I can breath as usual, even until today and this moment. I feel bless that I still can walk, I can run (with cats), I can sleep..etc.

Hearing test

Hello friends and readers.

Last week, I went to hospital for the doctor's appointment and hearing test. Hearing test was carried out for the purpose of to assess my hearing level after the surgery. I am aware of it already as the doctor at HEI informed it to me before the surgery.

The test showed a total loss of hearing at the right side. I am single sided deaf. I am bless that the left side of my hearing is still considered ok (lah).

The doctor suggested hearing aids & etc. It means, there will be a surgery. The hearing aids is not the normal ones as it involve surgery. I didn't make any decision yet so far as the hearing aids will cost about RM35,XXX (plus minus). The issue is not the cost of the hearing aid *** but also about the future.

My future is very uncertain now. The doctor suggested to me to wait first in order to look and to see the hearing level on my left ear, and monitor it through MRI scan. I still have a constant doctor's appointment in order to monitor my health. I have booked an appointment for MRI scan already, and because the MRI scan is expensive, I need to save certain amount of money.

I still can hear bird chirping, the cats is meowing, the TV, the knocking sound of the door (as my cats always like to bamm the door for no purpose reason). Enjoy the moments!

Cheers!!