ABOUT US
THE UKGREAT SICKLE CELL FOUNDATION [TUKSCF] is a non-governmental non profit making organisation dedicated to the purpose of creating awareness about sickle cell disorder, its effect and prevention. TUKSCF exist and acts as a support base with the primary aim of helping and assisting persons who have the disease, through proper information, orientation, medical and social care, live as normal as possible and reducing as much as possible, the occurrence of the disease.
MISSION
THE UKGREAT SICKLE CELL FOUNDATION is one that evolved out of a heart with the need to heal the hurts and change the mindset of people facing physical, emotional and social challenges, especially those with sickle cell disorder.
Our mission is to provide an established sickle cell support centre to provide programs and services to individuals affected by sickle cell disease, support services for teens with the disorder, patient support groups, tutoring programs, promote and carry out awareness event to sensitise the public, educate and enlighten them about sickle cell disorder through proper campaigns, awareness programs, education, counselling, through decent and affordable health care system and better sickle cell screening. This will help reduce the occurrence and effect of sickle cell disease.
At TUKSCF, we believe that, through brainstorming for new ways and ideas to bring awareness to every community about sickle cell disorder; that will be the only true way to strengthen our families, loved ones, lost ones and communities at large.
We consequently hope to create an avenue where those facing this problem are able to share their problems and experiences with one another and at the same time learn from experiences of others.
TUKSCF hopes to create a supportive base with an atmosphere where people can find hope, healing and strength in their emotional turmoil and to change the mindset of youths by challenging them to look beyond their circumstances and increase their knowledge through proper campaign, learning and sharing of ideas.
We hope to collaborate with World Health organisation; [WHO] and other health related bodies; this is a very important integral part of TUKSCF programs, aimed at assessing the efficiency and effectiveness of TUKSCF outreach, input, output (impact) and the overall support of TUKSCF projects. We will TEACH, INSPIRE, ENCOURAGE, MEDICATE, and SHARE ideas, just to bring hope for humanity.
THE INSPIRATION
My name is
UKEME BASSEY, the founder and inspiration behind this initiative. As a child then, still growing up, my big brother was always in and out of the hospital since he was born so much that at the age of seven, the hospital had become his second home. Whenever he had an attack, he spent weeks, sometimes months before getting better. At the age of twelve, he had developed a high tolerance for pain; he was always stuffed with drugs to help avert his frequent attacks. So many times I watched him groan and moan with pains as I sit down close to him to assist him share his pains. He tried to beat the odds that are set against more than 85,000 African American and a larger number of Africans with deadly sickle cell disease, an inherited disorder that causes red blood cells to become sickle-shaped, making it difficult for them to pass through blood vessels. He couldn’t make it pass his 21st birthday. He was a very talented visual artist, with love for nature, paintings, crafts, drawings and he loved bright colours. We were made to understand that our both parents are” AS”, that they carry the gene that can pass the disease to their offspring,, that they were Ignorant of this fact because they were not enlightened and did not take the genotype test due to lack of or poor campaign and awareness programs and poor sickle cell screening.
From this drive came the vision; “I can create a medium, a forum, a base, a platform, where people can be informed, taught, educated and enlightened about sickle cell disorder, to prevent them from making wrong choices in their lives. Then THE UKGREAT SICKLE CELL FOUNDATION initiative was conceived.
ABOUT SICKLE CELL
Sickle cell anaemia is a disorder of the blood and it is commonly (but not predominantly associated) with the black race. It is a hereditary disorder and is derived when both parents have the sickle cell trait, AS. Generally, anaemia is defined as a deficiency in the number of red blood cells or in their haemoglobin content, resulting in pallor (paleness) and lack of energy.
It is an inherited haemoglobin disorder comprising sickle cell anaemia (Hb Sc) and some less prevalent but related considerations such as sickle haemoglobin C disorder (Hb SC) and sickle beta thalassaemia (Hb SC). The genes for these conditions arose as a result of mutation from in where there is or there was a high incidence of a type of malaria called falciparium malaria, the most lethal strain of malaria known to man.
People with sickle cell trait (Hb AS) are thus protected from sickle cell symptoms and complications by the presence of Hb A. They are mostly protected from death caused by malaria, especially in early childhood, by the presence of Hb S. They enjoy the best of the world and are naturally better adapted to malaria infested environment than their Hb counterpart, who is more liable to childhood death from malaria, or the sickle cell affected one with Hb SS in whom malaria easily induces a lethal degree of anaemia.
Generally anaemia is a deficiency in the number of red blood cells or in the number in their haemoglobin content, resulting in paleness and lack of energy. In the case of Sickle Cell Anaemia, the name is derived from the sickle shape the blood cells take, which then makes it difficult for these cells to receive adequate oxygen the time the blood needs to be renewed in the body. As a result, the red blood cells soon die off, leading to moderately severe anaemia. The resultant effect is the attacks of pains in the bones, joints, and abdomen etc, usually referred to as “crises”. These attacks could last for hours, days or even weeks and could lead to complications such as leg ulcers, osteomyelities (bone infection), jaundice, gall bladder among others. There is still no documented cure for this disease although various drugs have been discovered which reduce the frequency in crises attack like Hydroyurea, Ciklavite, Nicosan, however some drugs like Hydroyurea should be use with caution as a result of side effects it brings. Research is still going on in finding a safe curative solution.
AIMS AND OBJECTIVES
To deliver counselling services to affected individuals, their parents, non-affected individuals and other carriers of the sickle cell trait.
To partake in research into various aspects of sickle cell disorder [SCD]; to get acquainted with the current trend and management of the disorder.
To organise, promote, fund and carry out worthwhile campaign, events, workshops, concert, shows etc aimed at reaching out to a large number of people, support groups, patients and carriers of the SC trait.
Implementation of community based services in the area of genetic counselling through campaigns and SCD awareness through brainstorming for new ways and ideas to bring awareness to every community about sickle cell disorder.
To partner with other support groups, clubs or foundations, local, state and federal government bodies, private agencies within and outside the country as may be necessary in pursuance of the aims and objectives of the foundation
CONTACT US
http://www.tukscf.blogspot.com/
http://www.tinyurl.com/33u648a
Email: tukscf@yahoo.com
Tel: +234 (0)7060720050, +234 (0) 7036507632, +234 (0) 7067832173
“WE HAVE THE INSPIATION TO CHANGE THE WORLD, YOU HAVE THE POWER TO HELP US DO IT”_TUKSCF
For those of you that want to be proactive to start a sickle cell movement in your community, it is not as hard as it seems. There are various avenues, depending on what type of group you want to create. Here are a few steps to get you started.
