19 June is observed as World Sickle Cell Awareness Day. A United Nation’s recognised day to raise awareness of sickle cell across the world. It aims to increase public knowledge and provide an understanding of sickle cell disease (SCD), and the challenges experienced by patients and their families and caregivers.
What is Sickle Cell Disease?
Sickle Cell Disease or sickle cell anaemia is a hereditary genetic disease characterized by the presence of abnormal crescent-shaped red blood cells. People with Sickle Cell Disease have abnormal haemoglobin (called haemoglobin S or sickle haemoglobin) in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body. The lack of tissue oxygen can cause attacks of sudden, excruciating, and severe pain called pain crises. These pain attacks can occur without warning, with pain levels often described as higher than childbirth labour pain and cancer-related pain.
The red cell sickling and poor oxygen delivery can also cause organ damage. Over a lifetime, Sickle Cell Disease can harm a person’s spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones, or skin. It can cause a stroke in children as young as two years of age! At the present time, hematopoietic stem cell transplantation is the only cure for Sickle Cell Disease.
Theme of World Sickle Cell Awareness Day 2023
The theme for World Sickle Cell Awareness Day 2023 is “Building and Strengthening Global Sickle Cell Communities, Formalizing Newborn Screening and Knowing Your Sickle Cell Disease Status.” This theme highlights the importance of building strong communities of support for people with sickle cell disease, as well as the need for universal newborn screening and awareness of sickle cell disease status.
Quick Facts about World Sickle Cell Disease
Here are quick facts about Sickle Cell disease.
- A child gets sickle cell disease (SCD) when he or she receives two sickle cell genes*—one from each parent.
- SCD can be cured for certain patients. A bone marrow transplant, which involves collecting healthy cells from a donor’s bone marrow and transferring them into a patient, can cure SCD. However, a bone marrow transplant may not be the best choice for all patients because it comes with serious risk. A bone marrow transplant expert can advise patients about whether or not it is a good choice for them.
- People with sickle cell disease are more likely to get certain infections.
- Doctors diagnose sickle cell disease with a blood test.
- The World Health Organization (WHO) estimates that sickle-cell disease affects nearly 100 million people worldwide and over 300 000 children are born every year with the condition.
- Tragically, the majority of these individuals will die in childhood due to a lack of basic care, and those who survive into adulthood too often face a life of chronic disability and premature death unless disease-modifying therapy can be provided.
How you can help
There are numerous ways we all can come together to help. Here are few ways but not just limited to followings:
- You can help by becoming a blood or bone marrow donor. Because patients with sickle cell disease occasionally need blood transfusions.
- The best thing you can do to observe World Sickle Cell Awareness Day is to spread awareness in your community, to friends, and families about sickle cell disease. Help others get educated.
- One of the impactful ways in which you can help sickle cell disease patients is by becoming a blood or bone marrow donor. Since the patients occasionally need blood transfusions, your blood will help them.
History of World Sickle Cell Awareness Day
The World Health Organization (2006) and the United Nations (2008) have recognized sickle cell disease as a global public health priority and in order to raise awareness of the disease, designated the 19th day of June every year as World Sickle Cell Day (WSCD).