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World Sickle Cell Day is observed on June 19. The day is meant to raise awareness about sickle cell disease, which is a group of disorders that affect haemoglobin, the molecule in red blood cells which deliver oxygen to cells throughout the body. People with this disorder have haemoglobin S, an atypical haemoglobin molecule which can distort red blood cells into a sickle or a crescent shape. This disease is a blood disorder which is inherited and passed down from parents to the child. In 2008, the UN General Assembly recognized sickle cell disease as a public health problem, and one of the world’s foremost genetic diseases.
World Sickle Cell Day: History
World Sickle Cell Day was established by the United Nations General Assembly in 2008 in order to increase the awareness about the sickle cell disease and its cure among the common public. It was celebrated first time on 19th of June in 2009. Sickle cell disease has become a common and foremost genetic disease worldwide which is must to cure through the fast awareness campaign, curable activities, early diagnosis and management.
United Nations General Assembly (63rd session) has declared the 19th of June to be celebrated as the World Sickle Cell Day annually to cover almost all the curable criteria through the fast awareness campaign to take this genetic health condition under control all over the world. Variety of promotional activities has also been started by the World Health Organization on worldwide level to resolve this hemoglobin dysfunction issue.
According to the statistics, it has been noted that more than 1000 babies are taking birth every day having Sickle Cell Disease in the Africa and getting die up to five years of age. More than 90,000 to 100,000 people are affected of this disease in the United States. However people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece and etc. It is a big public health issue worldwide which is must to take under control to save our healthy nation’s future.
This genetic health problem has affected people globally due to which the risk of premature child death has been increased. It needs effective control with the strategy of early detection, public awareness and effective partner shipping of the countries.
What’s Sickle Cell Disease:
It is an inheritable, genetic and fatal disease causing red blood cells disorders which has been classified as sickle cell anemia and may lead to death. It is the most common public health problem in the African and Asian countries of the world.
Sickle cell anemia means person suffering from anemia (less number of hemoglobin) due to the abnormal shaped red blood cells which gets stuck in their small blood vessels and cause blockage in the continuation of the blood flow in the blood vessels and whole body organs cannot get proper oxygen which leads to the common health problems like severe pain, organ damage or failure, severe infections, stroke, headache, liver problems, heart problems and so many.
Know The Symptoms:
Symptoms of sickle cell disease usually appear around five months of age. The symptoms vary from person to person and change over time.
- Pain: Sickle cell disease causes period episodes of pain. When sickle-shaped red blood cells block blood flow through tiny blood vessels to your chest, abdomen and joints, it causes pain. The pain can also occur in bones.
- Anaemia: Sickle cells break apart easily and die, leaving a person with very few red blood cells. This can cause anaemia. Red blood cells usually live for around 120 days before they need to be replaced. In case of sickle cell disease, they die in 10 to 20 days, leaving a shortage of red blood cells.
- Delayed growth or puberty: Red blood cells provide your body with oxygen and nutrients that are needed for growth. Shortage of healthy red blood cells can slow down growth and delay puberty.
- Frequent infections: Sickle cell disease can damage your spleen and make you more vulnerable to infections. Infants and children with sickle cell anaemia are giving vaccinations and antibiotics in order to prevent infections like pneumonia.
- Swelling of hands and feet: Sickle-shaped red blood cells block blood flow to the hand and feet and cause swelling.
- Vision problems: Blood vessels in eyes can become plugged with sickle cells. This can damage retina and lead to vision problems.
Symptoms of sickle cell disease can appear from two to five months of age. But in milder cases, the symptoms may appear till teenage.
Type Of Sickle Cell Disease:
One can get infected with sickle cell disease if both parents have the problem gene and pass it on to their child.
- HbSS or sickle cell anemia is a severe kind of sickle cell disease. It occurs when child inherits sickle cell gene from each parent.
- HbSc occurs when one parents has sickle cell gene and the other has a gene from abnormal haemoglobin.
- Hbs beta thalassemia occurs when sickle cell gene is passed from one parent, and beta-thalassemia is passed on from the other.
If only one parent has the problem gene, then the child will not have symptoms but will have the gene known as sickle cell trait.
Sickle Cell Disease Diagnosis And Treatment:
Sickle cell can be detected in an infant during newborn screening process. In case of family history, it can be detected during pregnancy.
Bone marrow or stem cell transplant is the only permanent cure for sickle cell disease. Early detection and timely treatment can help in managing symptoms, offer relief from pain and prevent severe complications.
Apart from stem cell transplant, the symptoms can be managed with the help of periodic blood transfusion, pain killers, vaccinations and antibiotics.
Why World Sickle Cell Day Is Celebrated:
World sickle cell day is celebrated every year on 19 of June all around the world to raise the public awareness about this fatal disease to get effective control over the situation. It is celebrated annually by the active participation of the various government organizations, health funding agencies, non-government organizations, NGOs and other health organizations. It has become very necessary to run variety of campaigns to aware common public on global basis as well as encourage them to actively participate in large number in the celebration to get much closer to the realities of this genetic disease.
It is celebrated to develop courage among public and support them through the educational and dramatic activities aiming to remove social stigma and myths about sickle cell anemia. It needs implementing widespread health programs for the screening of patients and early diagnosis of this disease. New parents are focused to get aware about the immunizations and its comprehensive care packages.
Global Sickle Cell Disease Treatment Centers have actively involved online promoting awareness, up-to-date and accurate information about sickle cell anemia, early diagnosis, treatment and etc. World health Organization has also made some commitment for promoting awareness of this disease such as:
- Increasing effective awareness of sickle cell anemia as a major health issue worldwide.
- People living in each and every community all around the world should get aware about.
- All the myths and stigmas about sickle cell disease are removed.
- All the member countries are requested to establish various health programs to make easy access to the treatment for this disease on the national and regional level.
- Promoting the availability of satisfactory access to the technical supports and medical services for all people suffering from this disease.
- All the medical professionals are given well training facility for better prevention, research work and accurate implementation of the resources minimizing disease complications.
Objectives:
- To distribute the real information about the sickle cell anaemia much closer to the common public worldwide.
- Offer a big opportunity to all of them suffering from this disease by letting them know about their sickle cell status through an early diagnosis.
- Provide them opportunity to get contacted with the service providers for their confirmatory tests.
- To get support from the health organizations for funding, screening reagents, microscopes and etc.
- To get together all the medical professionals including lab assistants, scientists, nurses, counselors and etc.
- To get online support through the various social media websites to easily and immediately distribute messages among youths and other age group people.
- To implement new health strategies to completely eradicate this disease from world.
- To motivate private, government and other health organizations for active participation in the complete eradication of this disease.
How World Sickle Cell Day Is Celebrated:
World sickle cell day is celebrated on 19th of June every year by organizing variety of awareness campaigns all over the world. Some of the awareness activities are motivating people for blood drives in the hospital or community, bone marrow registration drives, releasing balloons and butterflies, discussion campaign, general conversation program among common public, commemorative activities, awareness surveys of people, sharing of related stories through newspaper or online media, educational programs in community, presentations, sports activities, organizing rallies, meetings, press conference for awareness, fund raising for comprehensive treatment, blood awareness, donating tissues and cord blood, organizing comedy activities, quiz competitions and other related activities in the schools, colleges and universities.
Other activities include related message writing on hand and message distribution, pictures drawing, creating hopeful messages, posters distribution, lucky draw contest, health talks, massage posting on social media website, organizing free checkup camps for testing of the sickle cell anemia, people’s response broadcasting through the radio and TV channels, marathon and many more.
Theme:
- 2024: Hope Through Progress: Advancing Sickle Cell Care Globally
- 2023: Building and strengthening Global Sickle Cell Communities, Formalizing New-born Screening and Knowing your Sickle Cell Disease Status
- 2022: Shine the Light on Sickle Cell
- 2021: Shine the Light on Sickle Cell
- 2020: Shine the Light on SCD
- 2019: Sickle Cell Community Embracing Change Together
- 2018: SCD: Walk For Hope
- 2017: Break the Sickle Cycle
- 2016: Exhibit courage and address ineffective areas of support
- 2015: For Sickle Cell to stop being ignored you must STOP YOUR SILENCE and SHARE YOUR TRUTH
- 2014: Break the Silence on Sickle Cell Disorder
- 2013: know your sickle cell status
- 2012: Keeping Hope Alive
- 2011: Educate and Unite
- 2010: Awareness, Education and Hope
- 2009: The Burden of Sickle Cell Disease – a Public Health Approach
- 2008: recognition of sickle-cell anemia as a public health problem
