Wednesday, July 20, 2022
Tuesday, March 30, 2021
Malaysian Society of Haematology : Consensus Statement on COVID-19 Vaccination for Patients with Haematological Disorders
Thursday, February 4, 2021
Friday, October 16, 2020
Being diagnosed with CML is not easy. However, for the four brave CML survivors, they have took the extra mile to also advocate to the world that CML is not contagious, CML is not hereditary, and CML is not humiliating.
During the week of World Chronic Myeloid Leukemia (CML) Day, the four courageous CML survivors: Dr. Abd Razak Muhamad, Gan Li Li, Thilip Kumar and Rosmawati Sabli; have shared their story to the public community and shown appreciation to the Ministry of Health Malaysia, healthcare professional for their support throughout their CML journey.
The videos showcased the voice over recordings, sharing their story with photos of how they are maximizing their life and fulfilling their dreams, thanks to access to treatment, good monitoring and support from Ministry of Health and the healthcare professionals. I would say this path to advocacy wasn’t easy, it took these brave survivors years before they were fully ready to tell the world who they are and that they are living with CML.
Their videos were screened on digital advertising billboard 6AM – 12AM daily from 18 September – 26 September 2020 at the busy city center in Kuala Lumpur, Kuala Lumpur Sentral - it is the city busiest transportation hub in Kuala Lumper. It connects all the trains, buses, and transport interchange and is a prime location in capital city of Kuala Lumpur. Many people go through Kuala Lumpur Sentral every day. We did it! So proud!
They went to snap photo with their video on the digital advertising billboard:
Dr. Abd Razak Muhamad is the president of Max Family Society Malaysia, a local support group; leading the patient leader here. He is also a CML survivor of 14 years and is now an Orthopaedic surgeon and have his own family and 2 loving young adult children.
Gan Li Li is a committee member of Max Family Society Malaysia. She is now working as a Marketing Manager. I still remember the first time when she was diagnosed, she came to Max office with her mother, now she is so confident and living life the fullest compared to when she was first diagnosed 6 years ago.
Thilip Kumar is a student just graduated from his law degree. He is a 6 years CML survivor and now he is looking forward to step into the working society with full of hope. He always advocates and bring awareness on CML and Max Family Society Malaysia to his network and I remember dearly few years ago, he managed to convinced his University to have Max Family as one of the beneficiary for their campus marathon campaign and we had a booth in his University to bring awareness to students about CML.
Rosmawati Sabli a housewife taking care of her 4 children and always busy in in her farm planting fruits and vegetables – she always created interesting recipes and shares it in her Facebook. She has been living with CML for 10 years now. She is happy she is still able to do the things she like and able to see her children growing up.
They are all from different background, yet they are connected as one, with the goal to bring awareness about CML, Max Family and that cancer patients too can live a quality life with the access to treatment, good monitoring and support from stakeholders.
Watch their video here on Max Family Society Malaysia Facebook here:
These videos are made possible with the collaboration with Olliver (a patient leader from Kuala Lumpur, whom is a partner at an advertising company) and also Tony Leo (Malaysian singer and song-writer who is living with CML) and Juwita (from Tony Leo’s music company). Olliver managed to negotiate and advocate with his business partners to play these 4 videos in between interval of paid commercial advertisement for 30 seconds each video on two digital advertising billboards that the location.
We can make anything possible when we come together with ONE goal, ONE voice!
Happy World CML Day 2020!
Monday, October 5, 2020
I have the opportunity to know and really talk to him during his 2nd year diagnosed as a Chronic Myeloid Leukemia (CML) patient. I still remember it was during our first fundraising initiative in 2015 at Hospital Kuala Lumpur, paediatric ward. We invited all patients and even the public community to chip in goods and donation to give the children in ward during December 2015 as a Christmas visit. Some of our patients even dressed up as Batman and Santa Claus to cheer up the children.
He came with his college friends. He was pursuing his study in medicine that time when he was diagnosed with CML. There were so many uncertainties during those years where one would be pondering what the next phase of life would be. However for him, he was wondering would he be able to live a normal life like his peers?
His name is Thilip Kumar Ragavan and here is his sharing:
On 27th March 2014, upon receiving my blood result with diagnosis stated as Chronic Myeloid Leukemia, I had no clue about the disease nor my future. All I felt was sad, for being unsure of lots of things at that time but then, I had these two words in my mind – it was HOPE & POSITIVITY! People without medical knowledge thought things going to end for me but I was still fine as the treatment option wasn't that conclusive yet at that moment. Fast forward, I got my second opinion and started the treatment with first generation of Tyrosine Kinase Inhibitor. Honestly, I have never liked my treatment phase with Imatinib as it will cause massive nausea whenever I take the pills and after a year, I was put on the highest dosage. Due to the nauseating effect and such, I usually take the tablets before going to bed but then being extremely lethargic at that time, I often fall asleep right after holding the pill on my bed. Eventually ended up with compliance issue which also affected my treatment journey. Switched to second generation with more tolerable side effects and well managed life.
Physically, the challenges were massive changes in body shape and skin color – where you will have to answer to lots of people why are you getting fairer or growing bigger despite exercising and such. I had trouble to control my weight and living in hostel affected my diet as well because you can never find proper healthy diet. Emotionally, till today I have a fear towards nausea and I will be very anxious when it's the appointment to receive you PCR test result. Also, being a multitasker and ambitious all the time caused myself working back to back and at my age (20s) that should not be an issue but then, side effects such as unexplained tiredness will be affecting my daily routine.
Challenges are meant to be faced! I have a very structured life, allocated specific time for fitness (daily basis), avoid stress as much as I can, healthy diet rich in fruits and vegetables, compliance with treatment, a good rest and motivational support from the loved ones has been helping myself to manage my 7th year of survival very well!
I believe that everything happens for a reason and the reason is, to make a strong comeback, to contribute back to society, to positively impact others' life and to prove to stakeholders that Cancer Survivors are unstoppable!
With Hope ~ Thilip Kumar Ravagan