Mr. Kofi Tenkorang, Chief Executive Officer of African Sickle Cell Watch, a non-governmental organisation, also appealed to the public to assist in the fight against the stigmatization associated with the disease.

Mr. Tenkorang made the call at the University of Ghana, Legon, on Saturday, during a health screening and blood donation exercise.

The programme dubbed “Legon goes Red Reloaded”, was supported by Youth Action Movement, Planned Parenthood Association of Ghana (PPAG), and African Sickle Cell Watch (ASCW).

[contextly_sidebar id=”LOXP3983gHGmLs5QX1nukQoQ9cBoWE4S”]Over 200 students are expected to undergo free HIV Testing, Eye and Breast Cancer Screening, Sickle cell disease and cervical cancer screening among others.

The occasion was used to distribute free condoms to the students and provide counselling services.

Mr. Tenkrong emphasized the need for the public to be made aware of the fact that sickle cell disease was not an evil disease as perceived by a section of the public.

According to him, the disease has been considered by the United Nations as a global public health concern which has social economic effects on a country.

The Chief Executive Officer of ASCW urged the public to do away with the notion that people affected by the disease often do not leave longer, adding that “persons with sickle cell disease could live a long and quality life if they get the needed support from families and embark on regular check-ups at medical facilities.”

He regretted the spate of divorce among couples whose kids have the disease, adding that women are now left with the burden of taking care of those children.

“This should not be so, men and women should rather come together to offer support in terms of financial, emotional and psychological support,” Mr Tenkorang said.

He appealed to the men who abandon their families to lend a hand in managing the disease and not flee from their marriages.

When asked why his organisation chose the University to embark on the screening, Mr Tenkorang said the students were young and were entering into relationships which could lead to marriages and therefore it was important for them to know their sickle cell status before marriage.

He further observed that the women dominated the screening exercise because they often feel the brunt of the effect of the diseases by taking care of children with the disease.

Mr. Tenkornag said one of the core mandates of his organisation was to create awareness through education and embark on advocacy of the sickle cell disease to reduce its prevalence and high morbidity in Ghana and Africa at large.

He said screening at the University was going to be a yearly affair to ensure that students ascertained their status and reduced the current prevalence.

Last year, Sickle cell Disease prevalence rate was about 25 per cent, and an estimated two per cent of births, amounting to approximately 15,000 babies were born with the disease annually.

The World Health Organisation estimates that, five per cent of the world’s population have traits, and over 300,000 babies are born annually with haemoglobinopathies (mostly Sickle Cell Disease and thalassemia).

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Source: GNA

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The programme which took place between Monday, 19^th June and Friday, 23^rd June, 2017 was under the theme: “Know your sickle cell status now” included a walk through the principal streets of Obuasi ,  a free health screening which included sickling test at the Obuasi Central mosque.

Commenting on the rationale behind the programme, the Municipal Information Officer for the Obuasi Municipal Assembly, Mr. Sampson Manu said statistics from the Obuasi Health Directorate points to the fact that between 2015 and 2016, a total of 436 and 936 people respectively reported the disease in the Municipality.

The figure he said represented more than 100% surge.

This, he said, coupled with low public education called for the intervention of ISD, obuasi office.

With funds mainly through sponsorship from corporate institutions such as Anglogold Ashanti, Ghana Revenue Authority – Obuasi, Ghana Commercial Bank, Cofkans Hotel, Dr. Patrick Boakye Yiadom, Member of Parliament for the Obuasi East constituency, Medilab Diagnostic Services and the support of the Obuasi Municipal Assembly, more than 100 people benefited from the free screening exercise which was the first of its kind in the Municipality.

A Community Relations Officer of Anglogold Ashanti, Edmund Oduro Agyei also noted that AGA partnered ISD, obuasi to organize the sickle cell programme because the mining company prioritizes health issues in the Municipality.

Sickle cell is a group of disorders that affects hemoglobin, the molecule in the red blood cell that delivers oxygen to cells throughout the body. The signs and symptoms of sickle cell disease usually begin in early childhood and it includes repeated infection and periodic episodes of pain.

It is estimated that about 2% of newly born babies in Ghana are affected by the disease whilst over 95% of children born with the disease in Africa die before the age of 5 years.

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By: Jean Asantewaah Oduro/ISD

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“Don’t marry just because you are in love, do all the necessary checks before you get married or commit yourself to have children,” the MP advised.

She gave the assurance in an interview with journalists after contributing to a statement on the floor of Parliament made by Ms Francisca Oteng Mensah, MP for Kwabre East on the disease, as the world marked World Sickle Cell Day last Monday.

[contextly_sidebar id=”7lphL7nLA7UO0dYM4r1q7CnmM48p3xAK”]Sickle cell is a genetic condition which affects the red blood cells and causes it to break down with other accompanying diseases, which include the damage of lungs, heart, kidneys, liver, and eyes amongst others.

Ms Oteng Mensah said available data indicated that, 18,000 children were born in Ghana annually with the condition, of which 50 per cent died before five years.

Ms Tetteh expressed the need for prospective marriage mates to include in their counselling issues about the disease.

She said she would initiate discussions and organise outreach programmes for people to become more aware of the disease.

According to her, she is putting health issues as a priority in the area, and invited individuals, groups, governmental and non-governmental organisations to help in the health drive in the constituency.

Ms Tetteh concurred with Ms Oteng Mensah that, “We need all hands on deck as Ghanaians to fight against the sickle cell disease.

“I am calling on the Ministry of Health and other stakeholders such as Sickle Cell Foundation of Ghana, to regularly visit schools, churches, mosques, work places, football clubs and other associations to create awareness and educate people about the disease.”

The World Sickle Cell Day is set aside to help increase public awareness on the disease and the struggles carriers and their families go through.

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Source: GNA

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To complicate your woes, you often have low energy because your red blood cells have broken down.

Well, this is the everyday experience of people living with sickle cell.

As the World celebrates Sickle Cell Awareness Day, I spent time with a carrier of this deadly disease, thirty seven-year old, Kwaku Kwarteng Yeboah.

The term sickle cell describes a group of inherited red blood cell disorders. People with sickle cell have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells.

Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.

People who have sickle cell inherit two abnormal hemoglobin genes, one from each parent. In all forms of sickle cell, at least one of the two abnormal genes causes a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia. This is the most common and often most severe kind of sickel cell.

Encounter with Kwaku

I met Kwaku and his mother, also a carrier, on a rainy afternoon at their condition awareness center at Sakumono, a suburb of Accra.

Although he had a smile on his face I could tell he was in pain.

“For those of us who carry both sickling genes, we have bone problems and rheumatism. Any time it rains, life becomes unbearable, and we notice that our knees hurt all the time,” Kwaku lamented.

He added that gradually the body becomes used to the excruciating pain.

“There is constant pain in your body every time, but your body become used to it. We also have our cells breaking down all the time, our urine is yellowish and our eyes are a bit colored too. It’s never easy,” added Kwaku.

Kwaku said that for as long as he could remember, he has always been on medication, with regular trips to the hospital.

He believes sickle cell carriers never get the needed attention at public institutions.

Schooling becomes a headache

Schooling according Kwaku becomes difficult in such circumstances because they are made to endure same punishment just like an average human being.

“We are punished like the rest, made to weed like the rest with no exceptions. But the health sector is equally worse, we get to the hospital and we are made to join the queue like everyone else. They forget that our time ticks faster than the ordinary person. We got to the hospital with my elder sister and it was the same story. Her time got ticked away and she died. She was my elder sister and she just died from a pneumonia infection which was not given the needed attention.”

In Ghana, 25 percent of the population has sickle cell and two percent of all babies born in a year also have sickle cell.

I’m talking about an estimated 15,000 babies each year.

But contrary to earlier literature which suggested that persons born with sickle cell don’t live beyond ages 16, 25 or 30, some are actually still counting their ages; like thirty seven year old Kwaku who is now married with a son.

Marriage is a big deal

“Marriage is a huge deal when you have sickle cell, you always have to look for someone you are compatible with. Sometimes you meet a beautiful girl you would like to marry and she also turns out to have the gene. It’s really difficult. But I met a beautiful girl who loved me and was not a carrier. Her name is Loretta. Today we have a son, also a Kwaku but because of me, he is a carrier,” he said.

Although Kwaku bears no grudges against anyone for his predicament, he insists that there are mistakes some carriers must never make.

“The pain I go through every day is unbearable. I don’t think it’s fair for people to say they are in love so they got married even though they are both carriers of sickle cell. Who will do that to his or her child? It’s not godly. Personally I think its evil. You can’t cause a child so much pain because of love.”

But Kwaku’s mother, Charlotte Owusu however, blames herself and her husband for the family’s health challenges.

Though a carrier, Charlotte said she was not aware of their status at the time of their marriage.

The obvious emotional and financial stress took a toll on the family; they couldn’t handle it, and eventually contributed to their painful divorce.

“It was at Korle Bu Teaching Hospital that I was told my first born the girl had sickle cell and I asked what sickle cell was. I was then eight month pregnant with my son. I was so naïve. I went home to tell my husband and he knew he was a carrier. What was I to do? I was just 23. I was scared and very angry but the marriage did not even work. He wanted to have health children and he went ahead to have children but I was stuck with this children. I had to take care of two children with sickle cell,” Charlotte added.

But she did not give up. Together with her strong-hearted son, Charlotte has set up a not-for-profit organization; “Sickle Cell Condition Advocates” which creates awareness about sickle cell.

“We are interested in the condition of children with sickle cell. We are also interested in creating awareness. We do a lot of counseling too, especially for young mothers who are overwhelmed with the situation. We have done a lot in the three regions of the north. We have also signed a MoU with the ministry of health. But our next project is targeted at young children. We need to get every child tested so they know their status. It hasn’t been easy but my son is my strength and this is a fight we intend to win,” she added.

Though a silent-killer, many people take for granted their status in the choice of a marriage partner.

Only a few people care to test after the wedding bells have started ringing.

It might sound scary and insurmountable but Sudha Rao; a specialist pediatrician at the Pediatric Sickle Cell Clinic at the Korle Bu Teaching Hospital here in Accra, assures me, continuous public education and awareness is the most important key.

“Sickle cell is one of the most common blood disorders which are very common in our part of the world. It’s caused by the abnormal shape of the red blood cell. The normal cells are doughnut shape and the advantage is that they can squeeze themselves through the blood vessels. But this is not the same for the sickle cells which are deformed. This can end up causing stroke because the human brain needs blood and when it doesn’t get it, it stops functioning.”

“As doctors we don’t encourage carriers of the sickle gene to get married and reproduce because there is a fifty percent chance the child will be a carrier too. Now we are advocating for policies to be put in place that will ensure that every child is tested at birth. This is not currently in place. We have random testing and so many reasons given why the testing cannot be done. But when we are able to test the child at birth, then we can start early treatment and give those children more fighting chance,” the doctor added.

Check below for a full audio report:

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By: Felicia Osei/citifmonline.com/Ghana

The post Living with sickle cell; the untold story [Audio] appeared first on Citi 97.3 FM - Relevant Radio. Always.

Out of the number, 50 to 80 per cent die before attaining age five, a situation if not properly checked could deprive the nation of her future national assets.

Mr Kofi Tenkorang, Chief Executive Officer of Africa Sickle Cell Watch, a Non-Governmental Organisation (NGO) disclosed this at this year’s Sickle Cell Day celebration at Kwabenya in Accra on Saturday.

The Day set aside by the World Health Organisation (WHO) is celebrated on June 19 to create an awareness on the dangers of the disease.

He said this happened because carriers of the sickle cell genes were ignorant about the disease and only found out when their children were diagnosed with the disease.

The Chief Executive Officer said sickle cell was the most commonly inherited blood disease in the world and affected people living in countries surrounding the Meditteranean Sea.

He said parents who were both ‘AS’ could give birth to children who had normal blood ‘AA’, ‘AS’ or ‘SS’, adding that there were four other types of the disease but ‘SS’ was the most common type in the country.

Mr Tenkorang said people who carried a genetic trait often carried abnormal gene and a normal version of the same gene, one from each parent and in many conditions ‘you need a double dose of the genes from both parents before a disease can manifest’.

He said a different protein called haemoglobin was made in the red cells of the people with the disease, adding that they made a slightly different form of the protein that carried oxygen in the body which is called the sickle haemoglobin.

Mr Tenkorang said when the sickle haemoglobin was not carrying the oxygen it behaved differently and forced the red blood cells to ‘squeeze’ through small blood vessels to become stiff and very sticky and could block the flow of blood in the body.

‘When the highly fatal disease is diagnosed early parents can be advised on how to take care of their children to be able to survive’, He added.

The occasion was used to donate blood to stock the Ridge Hospital Blood Bank.

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Source: GNA

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