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Upcoming Project: To Demonstrate that Strengthening the Immune System Can Improve The Quality of Life of Children with SCD
The Problem:
Almost 200,000 children with sickle cell disease (SCD) are born each year.
50-75% of them will not live to see their fifth Birthday.
That’s over 100,000 each year, folks…dead. Dead without ever having really lived. And this does not even tell the story of the survivors – those who have to live with the terrible effects of this terrible disease, day in, and day out…
The strokes, the pain, the fatigue, the blood transfusions, the recurrent and eventually permanent bone and joint damage, etc. (link to pictures/videos of those kids from Rabi’s foundation)
And then, there are the crises… In younger children (1- 6 years of age), a crisis usually occurs in one of two ways:
- Sudden, excruciating bone pains – especially in the small bones of the hands and feet – otherwise called bone pain crises, or
- Sudden loss of blood volume, either by spontaneous large-scale disintegration/break up of red blood cells, or by sudden sequestration (or pooling) of blood into organs like the liver and spleen.
The former requires the infusion of fluids, pain relief, sedation, and treatment of infections. The latter requires, in addition, BLOOD TRANSFUSION. Both cases usually require hospital admission, sometimes for days.
And on and on it goes…until they eventually die, usually before their 30th birthday.
Socioeconomic Burden:
The current numbers do not take into account the financial burden this illness places on caregivers, the healthcare system, and the economy as a whole…and it certainly doesn’t paint a picture of the psychological and emotional toll this takes on the sufferers and their loved ones.
We can end that suffering, and those needless deaths…easily. With your help.
Our Discovery:
Through our work at the foundation, we have been able to demonstrate that children and adults with Sickle Cell Disease (SCD) can see significant improvements in their quality of life if their immune systems are adequately supported and strengthened. To our knowledge, improvements like these have never before been seen in Nigeria, which has the highest number of cases of SCD in the world (click here to view sample video testimonials from our patients).
Medical Goal
The goal is to demonstrate or prove in government hospitals that strengthening or supporting the immune systems of children with SCD can improve both subjective (more energy, better sleep, less pain, increased alertness, etc) and objective markers (improved hematocrit, improved white blood cell profile, better liver function tests, etc)
Immune System Supplement:
For our immune support, we will be working with a nutraceutical called “Immun” made by a company called Alovea.
Immun contains high concentrations of Acemannan (an aloe vera extract), a polysaccharide
polysaccharide (plant sugar or carbohydrate) which plays critical roles in immune system function and has strong safety and tolerability records and is readily biodegradable (see text)
We will be working with government hospitals in Nigeria, and at the end of the six-month process, we hope to have reproduced the same results we have been seeing in our clinic over the past four years.
Policy Goal:
Our goal is to change the way SCD is treated by healthcare professionals in Nigeria, other African countries and around the world so that we can drastically reduce the terrible morbidity and mortality statistics we are currently witnessing.
Financial Goal
The mission is to raise $200,000 to cover the cost of the research. This includes laboratory tests, hospital fees, purchase of medications and the standard or routine SCD supplements, stipends for healthcare professionals, etc.