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2023.06.02 Charity

The goal of 417 participants echoing to World Hemophilia Day event was achieved! Embrace lives free from the limitations

With a deficiency in clotting factors, hemophilia patients face not only the constant worry of accidental injuries but also the burdensome occurrence of spontaneous bleeding, particularly within the joint cavities. The recurring nature of these bleedings, coupled with the inability to replenish clotting factors on time, has led to disability among countless hemophilia patients in the past. Hence, the World Federation of Hemophilia (WFH) has proclaimed April 17th as "World Hemophilia Day," with activities organized worldwide to enhance the awareness of care among hemophilia patients and their families.

Preventing Bleeding as a Global Care Standard to Achieve Zero Bleeding

The theme of this year's World Hemophilia Day, "Preventing Bleeding as a Global Care Standard," aimed to incorporate preventative bleeding management into the standard care protocols, providing patients with access to comprehensive and optimal care. In Taiwan, the conventional approach to hemophilia treatment centers around sustaining and maintaining clotting factor levels equivalent to those of healthy individuals. Future endeavors will be directed towards making zero bleeding a tangible reality, enabling patients to embrace lives free from the limitations imposed by the disease.

Mobilizing 417 Patients to Join in the Event to Motivate Others to Break Free from the Confines That Hold Them Back

In observance of World Hemophilia Day, the Hemophilia Association of Taiwan, in collaboration with Chugai Pharma Taiwan, initiated the "Hemophilia Ambassador Harry Rabbit Four-in-a-row-shot" online challenge, calling upon healthcare professionals, hemophilia patients, and their families throughout Taiwan to participate.

The poses captured in the photographs were designed to showcase the unique joint movements characteristic of hemophilia patients, encouraging them to break free from the constraints of their condition and revel in a life where they can move freely. Chairman Chou Jui-chin of the Hemophilia Association of Taiwan said, "Apart from enjoying the fun of the four-shot burst, smiling and striking joyful gestures in front of the camera, these photos also convey satisfaction with the present healthcare and a positive outlook for the future."

Chairman Chou stated, "April 17th is recognized worldwide as World Hemophilia Day. In this year's event, we came together to accomplish a remarkable feat of capturing 417 four-shot bursts. With immense enthusiasm, these photographs embody the spirit of Taiwan's hemophilia patients, their families, and dedicated healthcare professionals. Assembled meticulously, they form the impactful composition of 'WHD APR 17,' standing for World Hemophilia Day and April. The number '417' sounds like the phrase 'together' in Chinese, symbolizing our deep appreciation for the efforts in caring for the patients together. In return, the patients expressed their gratitude through optimism and radiant smiles."

Frequent Intravenous Injections Interfere with Life, Subcutaneous Injections Enhance Preventive Treatment Efficacy

Chairman Chou shared that most young patients begin receiving prophylactic injections at the age of 1-2 years, administered three times a week at home. In order to prevent spontaneous bleeding and enable their children to move freely, parents, burdened with immense empathy for their children, stoically inject the necessary medication. The extent of their emotional turmoil is beyond the comprehension of people who have not endured a similar journey.

Thankfully, with the rapid advancements in medical technology, hemophilia patients now have the option of subcutaneous injections in addition to the conventional intravenous method, resulting in a remarkable reduction in the frequency of injections. Based on medical advice, the frequency can be reduced from multiple times a week to once a month, making prophylactic treatment more manageable for hemophilia patients. This enables the clotting factors to operate normally, eliminating concerns about restricted movement due to decreased clotting activity. Consequently, it brings about a complete transformation in the daily lives of hemophilia patients and their caregivers, instilling "confidence in medical treatment," providing "peace of mind in patient care," and offering "reassurance to family members."

Chairman Chou urges patients to follow medical advice and receive preventive treatment, aiming for a year of no bleeding incidents. With the backing of National Health Insurance, it is imperative to use medication responsibly and appreciate these opportunities. By supplementing clotting factors to prevent bleeding, actively engaging in rehabilitation and exercise, and strengthening joint endurance, hemophilia patients can break free from physical limitations and embrace a life of unrestricted mobility, thus fostering a healthy cycle of well-being.

Proper treatment paves the way for a fresh and promising future for both patients and their families, providing patients with an enduring vitality. Chugai Pharma Taiwan is committed to the United Nations' 17 Sustainable Development Goals, particularly the pursuit of "Good Health and Well-being," by assisting patients and their families in adopting healthy lifestyles, promoting the health of individuals at every age, and striving to elevate the standard of care for patients in Taiwan. Extracted from Healthnews 2022-06-02 press release on Official Website