Mrs. Juliet Kingsley is a happy woman. She was born with sickle cell disorder and she has been passing through pain for many years. But somehow, she seems happy not necessarily that the pain is gone but she is married to a man with AA genotype, hence her children will not pass through the challenge as she. As at present, she has given birth to three children.
With the joy that her husband is AA, all her three children are AS. That is her biggest happiness, though still in pain. She told the large crowd that gathered in Koko, headquarters of Warri north local government area of Delta state where Governor Okowa’s wife, Edith, commissioned a sickle cell clinic that the pain is unbearable, noting that the wahala of the sickness is not a joke. She added that people should not stigmatize sickle cell patients, insisting that it is not the fault of the sufferers.
According to her, it was not their making as they were not the determinant of their genetic makeup. It is biological, hence, society should not stigmatize the patients. She is also happy that her children are not ss so that they will not pass through the pain she is passing through at the moment.
She is not the only one who seems to be overcoming the challenge, a nurse, Mrs. Margaret Oromena, also shared her experience at Koko in Warri North. She said due to the pain she experiences, she at times goes to work four times a week and at times she does not go at all. She is a nurse at one of the General Hospitals in the state.
Going back to history, she said in her childhood days, some people advised her parents not to send her to school on the ground that she would die before she could complete her education. But her parents never gave heed to such advice. She was trained and today she is a practicing nurse despite having a sickle cell disorder.
She said her mother encouraged her over the years when people were almost making her feel hopeless and despair. She said: “My mother encouraged me, she gave me heart and strengthened my resolve to forge on with life.
“There was problem every day. Children will be eating biscuit and other sweet things but I ate medicine every day. Even at times when there is no pain.
READ ALSO: Why genotype test is a MUST before proceeding with marriage process
“When it’s time to play in the compound as a child, my mother will say the pain will come if I play with my friends. Sometimes I will accept, at other times I will not. If I don’t take it, I will suffer the consequences.
“I know there is no parents that will want their children to live such kind of life. When children are playing if I join them I will find myself in the hospital. If I dance, I will find myself in the hospital.
A cross section of people at the commissioning of the sickle cell centre
“This is why we are saying everybody should do test before they get married. If the result is not compatible, please let’s leave the marriage process because the end result will be catastrophic.
“But thank God, I struggled, I went to school and today, I’m a nurse. I work in government hospital. This year is 18th year of my marriage to a great Delta man.
“By May this year, I will be 49 years old. Sickle cell patients should take their medicine and plenty of water. They will live life like normal people. But I must needs say that the pain is not moi moi. Even though I am happy now, the pain is not a joke.”
These among others are the reasons why wife of Delta state governor, Mrs. Edith Okowa, has set her mind to establish sickle cell clinics in all the 25 local government areas across the state. Her intention is to bring succor to the lives of sickle cell patients in Delta state.
From the taking off of government in the state on May 29, 2015, she has built 9 sickle cell centres in major towns. She has built centres in Agbor, Ughelli, Oleh, Sapele, Kwale, Eku, Sapele, Patani and Koko area of the state.
On Thursday, March 2, 2017, her team was in Koko, the headquarters of Warri North local government area of Delta state, where she commissioned the centre in Koko to cater for the sickle patients in the local government. For her, she is pained considering the challenges sickle cell patients go through in the struggle for life.
At the centre where she commissioned the clinic, she said it is a privilege to give hope and meaning to the living conditions of sickle cell patients. She said the establishment of the centre is in line with the government’s program to promote good health for all people in the state.
According to her, the centres are to manage the occasional distress that accompanies the sickle cell hereditary disorder, noting that reports from the centres indicate that the patients in those places are doing well with the aid of the genetic counsellors who are committed to the wellbeing of the patients.
One of the ladies who is a survivor of sickle cell anaemia
Mrs. Okowa told the people that the projects were being run by humanitarian contributions from notable people in the various centres. In Koko, she listed people who contributed to the realization of the noble dream.
As a mother who feels the pain of children, she said: “The need for the fight against the stigmatization and misconception surrounding the sickle cell disorder cannot be over emphasized, therefore I call on all Nigerians to lend a helping hand to the needy, for we owe ourselves a duty to care for one another as sickle cell disorder is not a death sentence.”
READ ALSO: Delta assembly hails presidency over $20bn revitalization of Ogidigben gas plant
She encouraged the children and others who are facing the challenge not to give up as “each time I look at you I see a bright future. Learn to live your pain through a smile and have positive mindset. Always bear in mind that you are not a misfit but a hero to be celebrated.”
In the event, she enjoined mothers to avail themselves of the facilities provided when the children needed the attention. She said the clinics are established to ensure quick response to sickle cell patients who sometimes die while waiting on long queues in hospitals and urged them to make good use of the equipment.
She explained that the fight against sickle cell disorder should not be left in the hands of parents, caregivers and sickle cell sufferers, hence she called for more partnership in supporting those challenged by the hereditary disorder.
She insisted that the treatment for all affected persons is free at the established centres, in spite of the cost of medicine and equipment. She encouraged all people, irrespective of their positions, especially elected officials and political appointees to join hands to bring succor to carriers of sickle cell anaemia.
She said the goal is to establish sickle cell clinics in every town where there is a Central Hospital in Delta state. For her, it is a huge task, but a worthwhile effort and a project that must be executed for the survival of sickle cell patients in the state.
Another cross section of people at the commissioning centre
Sickle cell disease affects millions of people throughout the world and is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western hemisphere which include South America, the Caribbean, Central America; Saudi Arabia; India and Mediterranean countries such as Turkey, Greece and Italy.
Sickle cell disease occurs more often among people from parts of the world where malaria is or was common. It is believed that people who carry the sickle cell trait are less likely to have severe forms of malaria.
Sickle cell anemia may not be as well-known as, say, malaria, tuberculosis or AIDS. But every year, hundreds of thousands of babies around the world are born with this inherited blood disorder. And the numbers are expected to climb yearly, research has indicated.
The number of sickle cell cases is expected to increase about 30 percent globally by 2050, scientists said. Countries in sub-Saharan Africa, where the disease is most common, are said to be the hardest hit.
A child gets sickle cell anemia by inheriting two copies of a defective gene, one from each parent. The mutations cause red blood cells to collapse and form a crescent moon-like shape. These so-called sickle cells clump together and can’t carry oxygen throughout the body.
Because the red blood cells are sickling, they cause blockages of blood vessels all across the body. The lack of oxygen and blood flow causes chronic pain and makes patients more susceptible to many infections.
In developed countries, like the U.S., babies are routinely screened for the disorder, and with the right care they can live well into adulthood. But the vast majority of kids in developing countries don’t get diagnosed or treated for sickle cell anemia.
Up to 90 percent of these children die in the first five years of their life. The World Health Organization has long recognized sickle cell anemia as a global health issue. But as at present there is yet no cure for the disease.
0naze
No comments:
Post a Comment