It is considered World Haemophilia Day every April 17. The day dedicated to people living with haemophilia is observed to raise awareness and create a better future for them. Haemophilia is a “rare disease” that affects the blood's ability to clot, as well as other bleeding disorders.
Living with the complications of haemophilia can be challenging. However, proper home remedies and encouragement from the people around, can raise a better quality of patient life and live happily with haemophilia.
Dr Monthon Suwannurak, the President of the Thai Haemophilia Patient Club (THPC), said, “More than 1,600 people in Thailand, have been diagnosed with haemophilia and more than 20 years, THPC was established. We would like to gather all haemophilia patients to become one family and more than 700 patients throughout the country join as a member recently. We have regional networks which include patients from the North, the Northeast, the East, the South and the central patient network in Bangkok in coordination with the National Haemophilia Foundation of Thailand which Emeritus Prof Lt Gen Tip Sripaisarn is the chairman”
Monthon also emphasised, “THPC anticipates as a linkage of everyone into the same community whether patient, patient's family and caregivers. We intend to have a network that everyone can rely on, talk to each other, exchange, assist and seek advice. THPC also means to be a knowledge centre of treatment and medical advances to enhance effective care for all haemophilia patients.”
“Besides being a knowledge centre for better care, THPC supports our haemophilia patients for the individual self-development. We want our patients to follow their dreams, take good care of themselves, help others and contribute to society. To illustrate, developing English communication skills, this upholds our patients in exploring medical sciences, enhances abilities for their studies and work, encourages them to attend international conferences as a THPC representative, inquire new knowledge, leverage the club activities to help others and ultimately to reinforce themselves. By coordinating with organisations and the private sectors, thus, we have English learning courses, exercise activities and other learnings to bring out the individual potentiality.”, said Monthon.
Dr Apiwat Akarapattananukul, who is living with severe haemophilia A, mentioned, “I believe in the individual potential in every haemophilia patient according to their aptitude and ambition. Take me as an example, I have a dream that I want to be a doctor. Along the way in the past, people always ask - Haemophilia is an incurable bleeding disorder, doing normal activities with difficulties, are you sure you can study medicine? Now I become a doctor. Living with haemophilia taught me patience and appreciation of a great endeavour, it was the main driving force that made me stand at this point. This can be proven. If I have no congenital haemophilia, I probably did not study medicine. I would like to represent haemophilia patients to address that, believe me, haemophilia is never the limitation of anyone's dreams. And if we have to take good care of ourselves, every dream of every haemophilia patient is always possible”
John Dawber, Vice President and General Manager of Novo Nordisk Pharma Thailand, disclosed, “The Journey of Novo Nordisk in Haemophilia goes right the way back to the 1980s and around the same time Novo Nordisk was founded here in Thailand. Our activities with haemophilia are the development and relentless work for new medicines and new treatments. It is imperative that we have the highest quality treatments every single day to keep people alive. It is great having innovative treatments, it is great having high-quality treatments, but we need to work hard to improve access and availability to people with haemophilia”
“Therefore, we must collaborate with professional organisations, other companies, and patient organisations here in Thailand to serve the patients. And in our case, the THPC is super important to be able to collaborate, support and really empower patients with haemophilia. Our mission to work with the patient club is to ensure that no patient with haemophilia is stopped from living their dreams and doing things that people without haemophilia can also do”, said Dawber.
Published : Aug 12, 2022
Published : April 19, 2022