The 19th of June is World Sickle Cell Day – a day of raising awareness!
World Sickle Cell Day is a United Nation’s recognised day to raise awareness of sickle cell at a national and international level. On 22nd December 2008, the United Nations General Assembly adopted a resolution that recognises sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for members to raise awareness of sickle cell on June 19th of each year at national and international level.
What is Sickle Cell Disease (SCD)?
Sickle cell disorders are a group of illnesses that affect your red blood cells. Sickle cell is a genetic condition, which means it is passed on from your parents and you are born with it; you cannot catch it from other people.
Sickle cell disorders causes your normally round and flexible blood cells to become stiff and sickle-shaped, stopping the blood cells, and the oxygen they carry, from being able to move freely around the body and causing pain. This can cause episodes of severe pain. These painful episodes are referred to as sickle cell crisis.
50-75% of Children born with sickle cell disease in
Nigeria will not live to see their fifth birthday
This is truly tragic, but it is also only half the story…those who SURVIVE end up leading lives that are restricted, filled with pain and suffering, and in many cases hopeless. And why hopeless? Because they know (or think) there’s no solution, and that no matter what they do, it’s highly likely they’ll live past their 40th birthday.
Did you know?
8 Facts About Sickle Cell Disease (SCD)
1. SCD is inherited from both parents; sickle cell trait is inherited from one parent.
2. SCD can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
3. About 150,000 to 200,000 kids are born with SCD in Nigeria.
4. A simple blood test will tell whether you have a Sickle Cell trait or the disorder.
5. Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
6. Episodes of pain may occur in sickle cell disorder and are generally referred to as a Crisis.
7. Sickle Cell trait is inherited when only one of your parents has passed on the sickle gene and will never develop into Sickle Cell Disorder.
8. SCD causes your normally round and flexible blood cells to become stiff and sickle-shaped. These sickle-shaped blood cells stop the blood cells and the oxygen they carry from being able to move freely around the body causing pain.
Sickle Cell In Nigeria: Our "EndGame"
Our goal is to bring this figure down to no more than 10% in no more than five years.
How are we going to achieve this? The same way we have approached every challenge: by adopting what we call “The C.A.R.E. (Charity, Advocacy, Research and Education) Initiative.”
Let’s explain each concept:
This is where you come in. Your contributions to this cause help us secure the resources with the need to accomplish the other tasks in the C.A.R.E. initiative. So, it is the most important aspect and why we continue to engage you, the benefactors, to help make the goal of improving the quality of life of SCD victims a reality.
Project Nigeria: In previous emails, I mentioned the partnership we have gone into with the Embrace Kids and Tackle Sickle Cell Foundations, both of which are sponsoring the provision of supplements for 2000 children for a whole year. Payment has been made to the manufacturers. We are hoping to take delivery in the next few months.
Here’s a link to view the video I did with the McCourty Twins (NFL players with New England and Miami Dolphins) who are quite motivated to support our work, having lost a loved one to the condition.
We hope other individuals, NGOs, private and government institutions will follow our lead, because, as you know, this is just a drop in the bucket (there are over four million people living with SCD in Nigeria alone).
Free Friday Clinics: Of course, our Friday clinics continue to take place, and parents can call us from around the country to have supplements sent to them.
New Clinic Outreach Center: We have added a new center – the Kubwa General Hospital in the outskirts of Abuja, where parents can bring their children every week. See more information here.
In the final analysis: real, lasting change can only come when the government is a willing partner. We have been quite fortunate to enjoy a lot of goodwill from the Nigerian government. A lot of this has come because of the results we have been able to consistently demonstrate in the children we support.
Our goal is to have policies written that support the following:
Doctors and other healthcare professionals everywhere routinely prescribing, at the very least, vitamins C, D3 and zinc (in addition to folic acid and antimalarials).
Parents of children diagnosed with SCD routinely giving their children the basic supplements: vitamin C, Vitamin D3 and zinc.
Older SCD patients and individuals with complications being routinely treated with nutraceuticals…in addition to any other medications they may be taking.
Here’s what we have been able to do so far:
We recently signed a five-year partnership with the Nigerian government to address, manage and research the use of nutritional supplements and nutraceuticals in the treatment of sickle cell disease at all ages.
Received ethical approval to study the efficacy of vitamin D3 in the management of children with sickle cell disease from the Health Management Board of the Federal Capital Territory, Abuja in Nigeria.
Received approval from the Lagos state government to study nutraceuticals in the management of sickle cell disease.
We are hoping to work with other state governments and indeed, other countries as well, where this condition is a problem.
As we’ve already alluded to, it doesn’t matter how pure or lofty or noble our intentions may be, doctors aren’t simply just start adding these nutrients to the standard medications (folic acid and antimalarials) they’ve been prescribing for decades…they must be mandated to do so through regulations or government policy.
Similarly, health policies aren’t just going to change themselves; the ones in charge of making those policies must be given a compelling reason to do so.
Clear, irrefutable, undeniable evidence is the only thing we can think of that will provide that reason.
Hence the need for research
Here’s what we’ve been able to do with your help so far to further research in this field:
Partnership with National Sickle Cell Foundation: We are two months into our 6-month study on the use of acemannan in children with SCD at the national sickle cell Foundation facility in Lagos. Click here for more information
Published a paper on the treatment of brain disorders (one in ten children with sickle cell disease suffer strokes) in top journals. It can be found on the National Institute of Health website. See here.
Another paper on sickle cell disease is awaiting publication at one of the major international journals.
Reaching the General Public via Television and Social media:
You’ve probably heard that Our weekly TV show, Your Health in Your Hands, recently won an award for the best health show in Africa. We are incredibly honored and grateful to receive it. Hopefully, it will be a platform for us to reach so many more people. Click here for more information
We are seeking to be on more TV stations to educate Nigerians and others about what they can do about this dreaded disease.
We are also quite active on several social media platforms. You can find us on any of the big four: Brain and Body Foundation.
Training the Next Generation of Healthcare Professionals:
Our mandate from the Nigerian government includes the training of medical doctors and other health professionals (especially in our philosophy and approach (called the Building Strength Approach). More on that his will be a wonderful opportunity to make a huge difference and improve clinical outcomes. More to come on that.
Testimonials: Stories of Sickle Cell Warriors
How can I get involved?
World Sickle Cell Day is a day dedicated to raising awareness of sickle cell and celebrating the achievements of those living with sickle cell.
We would love for you to get involved this World Sickle Cell Day by raising awareness of sickle cell amongst your friends and families. To help you do this we have created a whole range of graphics, social media posts and facts which you can share and re-tweet our posts throughout World Sickle Cell Day!
The Brain and Body Foundation exists to support those living with sickle cell to reach their full potential and we rely on your kind support to make that happen.
World Sickle Cell Day is the perfect opportunity to set up a fundraiser to let people in your community know more about sickle cell and help support those living with the disorder. Join the Brain and Body Foundation in addressing sickle cell disease in Nigeria, Africa, and Beyond.
To support our work, you can make a monthly or one-off donation here: www.brainandbodyfoundation.org/donate-now/
Thank you for all your support!