Friday, September 29, 2023

A Multidisciplinary Approach to Managing Rare Disease

Does ‘Neurofibromatosis Type 1’ (NF1) cause any flicker of remembrance? Although classified as a rare disease, NF1 affects more Malaysians than we know. NF1 is a genetic autosomal dominant disease with 50:50 split; either inherited from the parents or caused by spontaneous mutation at the NF1 gene. NF1 is multisystem disorder that is characterised by the development of tumours on nerve tissue, skin pigmentation changes, and other potential complications affecting various systems in the body

The disease can occur early on among children, with 1 in 3,000 children estimated to be diagnosed with NF1 globally. As the early symptoms can include light-brown spots (café’ au-lait macules) on the skin or bumps developed either on or under the skin (neurofibromas), with risk of developing optic glioma at later stage of their lives, it can be challenging for parents to identify the onset of the disease in their child. 

Among patients with NF1, 30%-50% of them may experience plexiform neurofibromas (PNs), majority of which are present at birth, PNs can cause extreme disfigurement, be very disabling and interfere greatly with the regular growth and functioning-. NF1 also often carries a significant psychosocial burden for patients, as other symptoms include tumours that grow on the nerves, causing visible bumps that may draw unwanted attention in public.

Given its importance, a group of experts comprising - Professor Dr Thong Meow Keong, Consultant Clinical Geneticist, Department of Paediatrics, University Malaya Medical Centre; Dr Ngu Lock Hock, Head of Department, Department of Genetics, Hospital Kuala Lumpur; Azrul Mohd Khalib, Founder and Chief Executive Officer of the Galen Centre for Health and Social Policy and Puan Nadiah Hanim binti Abdul Latif, President of Malaysian Rare Disorders Society - came together at a media forum to discuss the importance of tackling NF1 through a multifaceted approach. 

Dr. Ngu Lock Hock, Head of Department, Department of Genetics, Hospital Kuala Lumpur shared, “Removing barriers to awareness is an essential step to improving understanding of NF1 not just with the public, but also among healthcare practitioners. Ideally, we can do this enhancing the medical curricula around rare diseases and by leveraging social media for awareness. Working collaboratively with patient support groups to initiate policy changes and funding is also crucial in the rare disease space.”

Speaking at the event, Professor Dr. Thong Meow Keong, Consultant Clinical Geneticist, Department of Paediatrics, University Malaya Medical Centre said, “NF1 is a disease that requires input from various medical teams, including neurologists, geneticists, hemato-oncologist, surgeons, and other experts from various disciplines. For this reason, adopting a multidisciplinary approach to managing NF1 is a necessary step forward.”

“Establishing a working group of experts to guide the refinement of diagnosis is important for improving the management of NF1 and ultimately, derive better patient outcomes. We need to push for policy changes on approaching rare diseases and it covers decentralising funding, services, and resources to ensure equity in healthcare in Malaysia. Additionally, medical training to produce more rare disease specialists and providing recognition and posts for genetic counsellors are required,” added Professor Dr. Thong.

Supporting the call for policy change, Azrul Mohd Khalib, Founder and Chief Executive Officer of the Galen Centre for Health and Social Policy opined that policy changes that foster an ecosystem approach to managing rare diseases and gaining access to treatment is needed to provide patients with better health outcomes. 

Azrul explained, “As NF1 is uncommon knowledge to the public, there is a high unmet need of patients seeking for right diagnosis and effective treatment. Tackling NF1 requires a holistic approach, involving various disciplines and enhancing existing policies to address ongoing challenges for this rare disease.”

Puan Nadiah Hanim binti Abdul Latif, President of Malaysian Rare Disorders Society (MRDS) stated, “Rare diseases often go unnoticed, leading to a lack of vital information in the public space for the patient to cope. Patients need clear guidance from the relevant parties that can support their disease management. Our efforts to drive awareness of NF1 is deeply rooted in the desire to help people learn about NF1 and, to seek for diagnosis and eventually treatment.” 

“MRDS continues to work collaboratively with patient groups, healthcare professionals, and all stakeholders involved to improve patient journeys from early and accurate diagnosis to treatment and beyond. We are committed to working with all stakeholders to continue to push and ensure that the right to health and wellbeing of all individuals living with rare diseases and their families are upheld in Malaysia. In upholding the country's commitment to Universal Health Coverage, we believe that No One Should Be Left Behind.”

To further drive public awareness on NF1, a new microsite themed Let’s Now Figure 1 was launched at the forum. Supported by AstraZeneca, the new microsite serves as an information centre offering fundamental knowledge on NF1 - its symptoms and diagnosis methods – and insights on management methods for NF1. 

Visitors to the site can learn more about potential healthcare teams to reach out along with the (patient) treatment plan, providing useful information for newly diagnosed patients or, parents with a child diagnosed with NF1. 

Wednesday, September 20, 2023

IZARA @ Bayu Sutera, Bandar Sri Sendayan, Negeri Sembilan

I decided to pay a visit to Matrix Concepts Holdings Berhad's project: IZARA @Bayu Sutera, Bandar Sri Sendayan, which is located at Negeri Sembilan, my hometown. I'm truly amazed by Matrix's project, for integrating sustainability to create green communities while adding advance technology touch IZARA @ Bayu Sutera - smart home concept!


I like the overall structure of IZARA's project, therefore, I decided to head over to their show room for a better glimpse of the house.

The location of  IZARA @ Bayu Sutera, is nice, surrounded by Matrix International and Private school, X-Park and d'Tempat Country Club. Later I wanna tour around these places too!~

But before that, Enjoying myself, chilling at the living essence of a premium address... The whole neighbourhood is just too superb!

Ta-Da! Here I am, inside IZARA @Bayu Sutera show house! The living room is so spacious and so comfy!

Wanna join me and have a cuppa tea?

As a cooking-lover, a visit to the kitchen is a must!

Downstairs room, ideal for old folks at home, whom don't like to climb up and down the staircase to much!

Yoo-HooNow I wanna bring all of you to upstairs....

I like the open air cupboard design... So easy to grab my attire!

Feels so comfortable inside the middle room... 2 rooms with attached bathroom.

Reading is a good habit and I always wanted a house, with a super comfortable reading corner like this. Somewhere I can have some quiet "me-time' at home..

I like this kiddo's corner... Perfect house for perfect family. Home Sweet home..

Even the kid's room also is so spacious! Nice!

Finally! The master bedroom... A cupboard design, can put just everything inside. Clothes, bags, toiletries, make up stuffs etc etc...

A corner to "ban-leng-leng" The transformation starts here.. hahahahah~

After put in a Super King size bed, still got plenty of space to move around in the master bedroom. Lavish living, Rejuvenating recreation, Sensible spaces!  I'm loving it, so much!

Now, let's look at the surrounding.... Once in a while, if lazy to cook, can always ops for eating out. There's so many wide variety and choices of food to dine in and takeaways! Bandar Sri Sendayan, is indeed a self-sustaining city where everyone can live, learn, play, work and thrive all in one spectacular township!

Now, it's time for me to visit X Park...
My first stop
At Golf Driving Range...

A fantastic place to polish up my golf skill!

Vroom Vroom! It's time to feel some speed! It's racing time! 

Experiencing adventure at d'Tempat Country Club. Situated in the heart of Bandar Sri Sendayan, the d'Tempat Country Club in Seremban, spanning 380,000 sq ft. Hosting a variety of family-oriented activities for relaxation, recreation and leisure, this luxury venue integrates an array of lifestyles, catering to various age groups and preferences, and its only minutes away from Bayu Sutera! Guess what I heard? With purchase of property in IZARA, entitled 5 years of FREE membership in d'Tempat  Country ClubCan hang around here everyday! 

Visited the Matrix's gallery inside the country club, and I'm so impressed with the miniature... Can't wait for the housing area to be completed!

Look! an Olympic-sized swimming pool, for adults and wading pool with water slides for kids, water play and swimming sessions are never out reach. The poolside deck makes way for lounging and poolside dining, with great greenery and great views!

A gym room, with lots of equipment and fantastic kids pool view! I truly wanna start my gym session here, right now! Great to challenge one's inner sportsman with the spacious sports facilities here! With spectacular views of verdant landscapes, cutting edge cardio and strength training equipment, aerobics and yoga studios, and gendered steam rooms along with sauna facilities, this gym and fitness centre is revolutionizing exercise routines. Why pay for expensive gym membership when having one in just the neighbourhood? Fabulous, isn't it?

Kiddos having so much fun time at the children TV room!

Super duper impressive Audio-Visual Room. So cinematic! No need go cinema already, just stay here and enjoy all the happening movie!

If don't feel like reading at home, can always come to the country club's reading room. Dive into new book, catch up on some quiet reading or get grind going at work with reading room at d'Tempat! With books and reading materials, that's suitable for everyone! 

Last but not least, after a tour session in the whole neighbourhood, it's time to relax and have a nice spa session at d'Spa in d'Tempat Country Club.

In shorts, I'd really love to stay in IZARA @Bayu Sutera, Bandar Sri Sendayan, Negeri Sembilan! Such a great place to be in!

For more information, do hop over to 

Monday, September 18, 2023

MILO®’s largest Malaysia Day Family Fun Fair!

Our Malaysia Day's holiday is well spent,
By attending MILO®’s largest Malaysia Day Family Fun Fair...
At Putrajaya Challenge Park!

Drinking yummy Milo..
You prefer original or ice?
Why choose when we can have both, right?

First time trying out Nestle Mochi Matcha Red Bean...
We are all Mochi lover....
Little prince and mummy are Matcha lover...
Just suite our taste bud very much!
Taste superb when served cool!
So chilling!

Drinking Milo from Milo van....
Mummy's recalling memories while she's still schooling..
Looking forward for Milo from Milo van...
Don't know why,
It just tasted tastier getting that cup from the van...
Look at the skating competition on-going...

It's so fun to just watch them skate.....
A skill all of us yet to master......
Can try try since they got workshop here...
An experience money can't buy~

There's total of 5 activities we must completed,
To get chop-chop on our card,
To redeem a mystery gift...
Which is a Milo mug...
Since the whole family is having fun,
With all the activities,
And we are able to collect ALL the chops..
Our home is full of Milo mugs.. 
Which is the mystery gift.. 

Our lunch from Harvest Gourmet...
Indeed love at the first bite!
Love it as it's zero cholesterol...
It's plant protein..
Source of protein and fibre..
So healthy! So yummy!

Before we headed home.....
We bought Milo back..
At super reasonable price with freebies somemore...
Sure have to buy since all of us are typical Milo-lover...

A fun-filled day spent,
At MILO®’s largest Malaysia Day Family Fun Fair!


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