June 19 has been recognized by the United Nations as World Sickle Cell Awareness Day. It is celebrated annually with the aim of providing exposure and increasing public knowledge and promoting research on sickle cell disease.

Every year, more than 300,000 babies are born with sickle cell disease worldwide, with more than three-quarters of these occurring in sub-Saharan African countries. Nearly 8 million people live with this condition worldwide. In Malaysia, although it is rare, Indian and Malay communities are at higher risk.

Sickle cell disease is a genetic disorder of red blood cells that causes them to change from being round, curved in the middle and flexible to being hard and sickle-shaped. This condition can clog blood vessels, block oxygen supply and cause a variety of serious complications including acute and chronic pain, organ damage and even death.

What is the reality of life for sickle cell patients and their families? Constant pain, emotional and mental stress can affect daily life. The cost of treatment and frequent hospital visits for follow-up care can also cause emotional and financial burden and stress to family members in caring for the patient.

Although there is no absolute cure yet, current treatment for this disease focuses on controlling pain symptoms, increasing red blood cells through transfusions, and other medications such as hydroxyurea, which functions to produce red blood cells of normal shape. Gene therapy, which is still in the research stage, is one of the treatments that has the potential to cure this disease, therefore more studies are needed in order to improve the life expectancy and the quality of life of these patients.

How can we help?

• Share awareness on social media
• Donate to the sickle cell research foundation
• Donate blood - they need it so much!
• Support better health policies and easier access to treatment for those affected.

 

Therefore, in conjunction with World Sickle Cell Awareness Day, this disease awareness campaign can open up more support initiatives and research to improve the quality of life and better healthcare systems for the sickle cell patients. May each small action bring about a big change!

Dr. Razana Mohd Ali

Senior Medical Lecturer

Department of Pathology

Faculty of Medicine and Health Sciences

Universiti Putra Malaysia

Date of Input: 19/06/2025 | Updated: 19/06/2025 | nadia_rahman