"Sickle Cell disease plays a big part in my life.
It's an illness, which is hereditary and inherited from both parents.
I, like many others, have had to live and cope with the illness from birth", says Kojo Mensah, a 34- year-old sickle cell patient.
Sickle cell is a disease that can cause life threatening situations.
Those with the disease visit the hospital often, which affects productivity.
Kojo said: "Sometimes it is manageable but mostly it is not.
It can be unpredictable and without mercy.
We learn to live with it though it is not easy at all.
" Twenty-eight-year-old Lily Gordon, also a patient, said stress and worry could set off a crisis.
According to Lily, crisis could be described as an "unbearable episode of instability in the body which causes severe pain in single or multiple areas.
The pain experienced can only be described as unbearable.
" On his website, a 43-year-old patient, says, "I was in a slightly different situation.
I met the 'perfect' woman (you know when you've met them), however, she has Sickle Cell Trait (AS).
Now, I would not want to put my child through ANYTHING like what I've been through! I have control over that.
So the 'perfect' woman and I broke up, and the rest is history.
" Josh's childhood was one of pain and anguish.
His life was characterised by countless hospitalisations and bouts of pain associated with crisis but despite all the odds he managed to get a first degree and went on to get an MBA.
He was employed in one of the top institutions and finally got married on his 37 birthday, a feat that made him the pride of his family and friends.
Unfortunately he died exactly on his first wedding anniversary and on his 38th birthday.
The news of his death was received with shock by all who knew him and his funeral was attended by people from all walks of life.
His life though short was well lived.
This has been the plight of many sickle cell patients after 100 years of the discovery of the disease.
Sickle cell disease is a group of disorders that affects haemoglobin,the molecule in red blood cells that delivers oxygen to cells throughout the body.
People with this disorder have a typical haemoglobin molecule called haemoglobin S, which can distort red blood cells into a sickle, or crescent,shape.
Signs and symptoms of sickle cell disease usually begin in early childhood.
Features of this disorder include low number of red blood cells (anaemia), repeated infections and periodic episodes of pain.
The severity of symptoms varies from person to person.
Some people have mild symptoms, while others are frequently hospitalised for more serious complications.
The signs and symptoms of sickle cell disease are caused by the sickling of red blood cells.
When red blood cells sickle, they break down prematurely, which can lead to anaemia.
Anaemia can cause shortness of breath, fatigue, and delayed growth and development in children.
The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which are signs of jaundice.
Painful episodes can occur when sickled red blood cells, which are stiff and inflexible, get stuck in small blood vessels.
These episodes deprive tissues and organs of oxygen-rich blood and can lead to organ damage, especially in the lungs, kidneys, spleen, and the brain.
There are two types of sickle cell namely Sickle cell trait (SCT)-a carrier and the Sickle cell disease(SCD)-disease, which needs life long treatment and care.
Experts say the treatment of sickle cell disease is a daily intake of Folic acid (tablet, syrup or drop): It's vitamin needed for blood production protection against Malaria.
For this reason, people suffering from sickle cell disease must be protected well.
Experts say among young people dancing, playing in hot climate and insufficient sleep during examinations are major causes of pain episodes and must be avoided for better life.
They recommend regular check up at 3 months interval to help patients take medicines and observe self discipline in the management of the disease as well as inculcate positive attitude to boost morals.
Haemoglobin should be checked preferably at 3 months interval but it can be done at more or less interval depending on individual case.
With Regular check up and treatment sickle cell disease individuals can live almost normal lifespan.
Ghana would host the first Global Congress on Sickle Cell Disease, in Accra, on Tuesday, July 20, on the Theme: "Sickle Cell Disease, 1910-2010: 100 Years of Science, Still Seeking Global Solutions" It is being co-organised by the Sickle Cell Foundation of Ghana, Children's Hospital of Philadelphia, Sickle Cell Disease International Organisation,and Global Sickle Cell Research Network, and supported by the Local Organising Committee.
According to Mr Kwadwo Morgan, a member of the Local Organising Committee (LOC) of the First Global Congress on Sickle Cell Disease, the congress will bring together delegates from all over the world.
They include medical and research scientists, public health officials,national, international, and community-based sickle cell organisations,non-governmental organisations and people with sickle cell disease and their families.
He said recommendations for an organised global effort to address the many issues concerning sickle cell have been advanced at several recent international meetings including the Joint World Health Organisation-Thalassemia International Federation (WHO-TIF) Meeting on Management of Haemoglobin Disorders held at Nicosia, Cyprus.
Dr Ivy Ekem, Chairperson of LOC, said the congress would bring together people suffering from the disease.
It will address issues related to the health, educational and psycho-social needs of affected persons and families, public health issues, medical care, research, programme development as well as development of international community based organizations.
Briefing journalists on the prevalence rate of the disease in Ghana Dr Ekem said two per cent of children born daily had the disease, adding that, the figure represented the statistics available solely to the sickle cell centre at the Korle Bu Teaching Hospital.
She said a national newborn screening programme was expected to be implemented soon following the pilot programme initiated in Kumasi, in 1995.
Deputy Health Minister, Mr Rojo Mettle-Nunoo, inaugurating the LOC, stressed the need for Ghanaians to know the sickle cell status of their prospective marriage partners to reduce its incidence in the country.
For him, the congress was important because the disease, together with other communicable diseases, had debilitating effect on the quality of life and economic well-being of patients and their families.
Mr Mettle-Nunoo said: "The negative effects of the sickle cell disease on the human and economic development of the country cannot be taken for granted.
"The Ministry is happy that the upcoming congress would provide one of the platforms to enable researchers to meet to share ideas on the ways of finding solutions to this disease".
The November 1910 issue of the medical journal Archives of Internal Medicine (Arch Intern Med.
1910; VI (5):517-521) published a report by Dr James B.
Herrick entitled 'Peculiar Elongated and Sickle-shaped Red Blood Corpuscles in a Case of Severe Anemia'.
In that paper, Dr Herrick described Walter Clement Noel, a young man from Grenada who had come to the United States of America to study Dentistry at the Chicago College of Dental Surgery.
Three months after arriving in Chicago, Mr Noel had first sought medical attention at Presbyterian Hospital on December 26, 1904, and had been examined and treated by Dr Ernest E.
Irons, an intern training under Dr Herrick.
It was Dr Irons, who after examining the blood of Mr Noel, first noted the abnormally shaped red blood cells in a person with anaemia and symptoms typical of the disease that soon became known as 'sickle cell anaemia'.
According to the US Centre for Disease Control, although the severity of the disease varies from person to person, complications from Sickle Cell Disease (SCD) were often life-threatening but unfortunately, distribution of the disease is such that it occurs among populations that have limited access to comprehensive care due to social, economic, cultural, and geographical barriers.
People with severe SCD are now living into adulthood but can experience a life expectancy that is 30 years shorter than those without disease.
On December 22, 2008, the General Assembly of United Nations adopted a resolution recognising sickle cell disease as a public health problem.
As a result of this resolution, "World Sickle Cell Day" is celebrated on June 19, each year, to increase awareness about sickle cell disease at the national and international level.
SCD is, particularly, common among those whose ancestors come from sub-Saharan Africa, Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece and Italy.
The following statistics illustrate the impact of SCD in some regions:United States: 90,000-100,000 people are affected, mainly African Americans.
The disease occurs in about one out of every 500 African American births.
Sub-Saharan Africa: estimated to affect one to three per cent of new borns.
South America: in Brazil and Columbia approximately 1,500 to 3,000 children are born each year with SCD.
United Kingdom: more than 200 babies are born annually with SCD.
Middle East: an estimated 6,000 children born annually with SCD, at least 50 per cent of these in Saudi Arabia.
In most countries, where sickle-cell disease is a major public health concern, the infrastructure and basic facilities to diagnose and manage the disease are inadequate.
However, a global agenda to address these issues has been developed.
The World Health Organisation (WHO) has begun work to promote a global agenda to address haemoglobin disorders, also called haemoglobinopathies including SCD.
In May 2006, a resolution on Sickle Cell Disease was adopted that called on affected countries and the Secretariat of WHO to strengthen their response to these conditions.
Specifically, WHO has made a commitment to increase awareness among the international community of the global burden of SCD, promote equitable access to health services for people with SCD, provide technical support to countries for the prevention and management of SCD and promote research to improve quality of life for those affected.
Countries such as Ghana need to develop a national surveillance system to collect information on SCD and its complications to help determine occurrence rates and healthcare needs of people affected as well as develop registries at clinical sites to identify people with SCD and to gather information about the health impact of living with SCD.
It is expected that when these structures are put in place life would be more meaningful for SCD patients who though not easy would live with less pain.
By Audrey Dekalu .