Sickle cell and world sickle cell day

June 19 was World Sickle Cell Day, an annual event meant to raise awareness about sickle cell disease.

The medical condition is an inherited blood disorder characterised by abnormal haemoglobin, known as haemoglobin S, in red blood cells.

The day was officially recognised by the United Nations in 2008, to draw global attention to the disease, its impact on patients, and the need for research, treatment options, and support.

Below are the key objectives of World Sickle Cell Day:

Raising awareness

This involves educating the public and healthcare professionals about sickle cell disease, its symptoms, and its impacts on patients, families, and communities.

Many people, including healthcare professionals, lack adequate knowledge about sickle cell disease.

Raising awareness helps to improve understanding of the disease. Public awareness can lead to earlier diagnosis and better management of the disease, thereby, reducing complications and improving the quality of life for those affected.

Reducing stigma and discrimination

Individuals living with sickle cell disease often face social stigma and discrimination due to a lack of understanding about the condition.

Awareness campaigns can help dispel myths and misconceptions, promoting a more inclusive and supportive environment for those living with sickle cell.

Encouraging early diagnosis and treatment

Early diagnosis is crucial for managing sickle cell disease effectively. By educating parents, communities, and healthcare providers, World Sickle Cell Day can promote newborn screening and early intervention, which can prevent severe complications and improve long-term outcomes.

Advocating for better healthcare and resources

Highlighting the challenges faced by individuals living with sickle cell can encourage policymakers and healthcare providers to allocate more resources towards research, treatment, and support services.

Advocacy efforts can lead to improved access to quality healthcare, essential medication, and comprehensive care programmes.

Promoting research and development

Encouraging investment in research can help to develop better treatments and ultimately, a cure for sickle cell disease.

Increasing awareness can drive funding support for research aimed at developing new treatments and potentially finding a cure for sickle cell disease.

Research advancements can lead to innovative therapies that improve patients’ outcomes and quality of life.

Providing support and community

World Sickle Cell Day can foster a sense of community and solidarity among individuals affected by sickle cell disease, their families, and supporters. It provides an opportunity for sharing experiences, resources, and support. Community events and support groups can offer emotional and practical assistance to those dealing with the challenges of the disease.

Highlighting global health disparities

Sickle cell disease disproportionately affects people of African, Mediterranean, Middle Eastern, Latin American, and Indian ancestry. World Sickle Cell Day brings attention to these health inequalities and emphasises the need for global health equity.

It encourages international collaborations to address the disease and support affected populations worldwide.

By addressing these different issues, World Sickle Cell Day plays a crucial role in improving the lives of individuals with sickle cell disease and advancing the global fight against this serious genetic health condition.

Activities on World Sickle Cell Day include educational campaigns, blood donation drives, community events, and social media initiatives aimed at spreading information and fostering support for those affected by the disease.

On this year’s WSCD, yours truly was busy that day. In the morning, I was invited to an online television station, SRTV, to talk about sickle cell and all its ramifications. I spoke on the importance of drinking water and eating fruits and vegetables.

We also discussed appealing to the Nigerian government to help families with newborns who are diagnosed with the disease.

If you would like to listen to my interview, it has been uploaded online on YouTube. Search for SRTV Television and look at their live broadcast on June 19, 2024.

Later that afternoon, I made my way to the hospital as they were also having an awareness day right at the front of the hospital, just after the reception area.

I met nurses, who I already knew about my condition, and we chatted away as I helped engage in talks with passers-by who were looking at the leaflets on the table and wanting chocolates, biscuits, and cake slices.

I met an elderly couple, in their 70s, living with sickle cell, and that was the highlight of my day.

I find it inspirational when I meet elderly people living with SCD because I know they probably would have gone through a lot, and here they are still standing.

The senior nurse did not know them, and that, for me, meant they were doing something right in not being admitted to the hospital.

I spoke with them for a very long time, and when it was time to say goodbye, they had imparted so much knowledge of what they know and what they do to stay healthy and out of the hospital.

I left their company impressed, with my head buzzing with everything they had told me and that I had written down.

I will be doing my research on what I was told in the future.

We, of course, exchanged telephone numbers and have been in touch with each other since then.

I will be passing on the knowledge gained from them in the near future.

Until next time

If you would like to get in touch with me about sickle cell, do so via my email address: [email protected]. And do check out my blog: My book on sickle cell, “HOW TO LIVE WITH SICKLE CELL,” and my other books are available for purchase on www.amazon.com.