What is Neurofibromatosis?

Dear friends and readers.

I downloaded the above video from youtube with the permission of the owner, Ms Kristie Hopkins, from USA.

I hope, the above video will help you more and understand what Neurofibromatosis is.

Life is full with challenges guys. Live your life to the fullest and thrive it. Everyday is a new challenge, to me and to all people in this world. No matter what challenges you faces, the challenges actually makes you become stronger and stronger everyday.

Cheers guys!

Neurofibromatosis Awareness Month 2012

Hello friends and readers.

May 2012 has been selected as World NF Awareness month for 2012. Guess what will happen in the month of May 2012? There will be many activities involved.

One of the activities will be Fancy Dress for NF, on Thursday, May 17th, 2012. The aim of this event is to create awareness Neurofibromatosis (NF1, NF2, NF3 & schwannomatosis) and to all work together to stop (& find cure) this common genetic condition being invisible and start it being a household name. You may click on this link and to know more about it: www.facebook.com/events/303841886332757/

With this annual event it will get bigger and better with more people involved each year, and wouldn't it be great to say you were involved from the beginning!

All you need to do is wear Fancy Dress on the 17th of May 2012 and tell people why. The more people who wear fancy dress (especially if you do it in a group somewhere people will see you) the more chance we have of having NF recognised and getting press. After the event please e-mail a photo of you in fancy dress to fancydressforNF@gmail.com, the pictures will then be put to a vote with the top twelve photos being selected for a 2013 calendar.

A Celebration of Life foundation

Dear friends and readers. Do you remember last year, a public charitable foundation that Yvonne is setting up?

She is now working on it and she comes out with the name of the foundation "A Celebration of Life". Now, in order to promote this foundation, she'd like to create a logo to represent the foundation, something that the public can immediately identify and relate to. Are you good at graphics designing? If you are, would you like to help create a logo to celebrate life?

A Celebration of Life foundation will not only assist Neurofibromatosis patients in Malaysia financially. It will also inspire and encourage people to recognize the silver lining and the lessons behind their individual lives.

If you guys out there would like to design the logo with graphics designing, please get in touch with her through her e-mail Yvonnefmn(at)gmail(dot)com. At the same time, if you own a company or business, would you like to consider donating a gift to the volunteers who will help create this logo?

Noormawati is going back home from HUKM

Today, I read the information about Noorma (miera301.blogspot.com), that Noorma will be brought back home from HUKM because the doctor said that "there is nothing much they can do". Although I don't meet Noorma in person at the hospital, I know how she feels. At this moment, her husband and the family really needs support from you guys out there. Please, PRAY for her.

New Link

I have added another link called Neuro Foundation, UK. There are lots of information’s that may help you to understand more about NF and brain tumors. There is information for parent and teachers, as well as what to expect in the future, and also information for parent of what/how to tell to the teachers. Check the link! Cheers!

What to do if do nothing with AN?

Acoustic neuroma is a slow-growing tumor. It is a benign tumor, means that it will not metasize to the other part of the bodies. The AN can be life-threatening if it is not well treated.

The doctors/physicians may suggest to you to "watch and wait" through annual MRI Scan & etc. Here is the part that most people dislike, i.e., "watch & wait", because it involves uncertainty of future and a cost associated to it. It may growth or there is no growth. It may also shrink.

If the tumor is small, then most doctor will suggest to "watch and wait" approach, through annual MRI Scan. However, it depends on the symptoms that you are facing with. Sometimes, even though it is small, but the symptoms are severe, than the surgeons might suggest for surgery/radiation to slow the tumor from growing or get rid of them. All depends on your individual cases. Second opinion is possible.

Those people who are under "watch & wait"; you have to monitor yourself for your health. Watch out for your blood pressure, your lifestyle, your nutrition’s/diet, exercises & etc.

1) Don't worry too much because it might increase blood pressure. If you are stress, you know what best for you.

2) Your lifestyle. Try to live happily. You can have a pet (because it is good for you!), gardening, watch video, sings out loud (hehehehe) and anything that makes you happy.

3) Your diet. You can eat anything you like, but try to balance it. Have a good/balance diet or a good immune system for your body. Eat fruits (such as Apple & etc) and vegetables (such as Broccoli & Etc); eat supplementary for your diet.

4) Exercises/sports - such as Yoga, Tai Chi, martial arts, dancing, bowling, ping pong, cycling and etc. It depends on your balance. Most activities are good for you because it involves balance, focus and etc, but it depends on your priority. If you like games, you may try Nintendo-Wii, a game that involves balancing, focusing and coordinating.

After all, it depends on you!

"Tai Chi"

What to do if you have the symptoms?

There are many things you need to consider if there are symptoms of brain tumor, especially Acoustic Neuroma. Headaches/Hearing loss is one of the symptoms, however it is difficult to know the reasons as hearing loss can be caused by other factor.

1) Do not panic of the symptoms, because if you get panic, you may not be able to think wisely.

2) Go and see a doctor. If you go to see gp, they will give you a medication based on what you tell them. If the problems (symptoms) still persist, then you might need to see another doctor. Perhaps, the doctor at the clinic may refer you to a hospital.

3) When you are in the hospital, tell the doctor about your conditions. When you start feeling the symptoms, i.e, the date, how frequent the symptoms is, family history, what medication do you take, your allergy /reaction to certain drugs or medications.

4) Do some test such as: (Any of it or ALL). Some of the tests are required by the doctor. The tests are:
(a) Hearing test
(b) Audio logical test
(c) Biopsies (as when needed/requested by the doctor)
(d) Laboratories test
(d) Scan (X-Ray, CT scan or MRI Scan)
(e) Etc, which the doctor will request for it

5) From the above tests, the doctor will know the outcome. If the results of the scan show that there is a tumor, then, DON'T PANIC.

6) You might need time for yourself to think and to plan on what to do next, get advices from your friends and most important is to get the advice from those who have the knowledge, and a person who experience it (another patient). If possible get second opinion from another doctor, (the doctor will rely on the scan and the tests).

7) Do a lot of reading about your illness. You can read it by doing a lot of research on the web, or books and etc, because reading from these sources can help you to reduce the feeling of anxiety and it might also helps you to know what will happen to you in the near future.

P/s: I added another link for you guys, ie, (What is Neurofibromatosis)