My life with Sickle Cell in Africa and the stigma that I went through because of my condition
The stigma that I went through due to my condition started in the early age due to the lack of knowledge on my condition by the population; in the primary school, my classmates were going away from me because they believed that I could fall at any time. They attributed my condition to Epilepsy and they were homophobia to contract it.
From age of 5, my sickle cell crisis was so severe that I was falling on the street constantly, sometimes at school and I could not walk and my classmates were abandoning me. My father or my mum was called or sometimes people brought me to the nearest hospital and my mum and father were calling from there. My life was so hard that even when I went to the high school, I was stigmatised by my classmates and neighbours including my extended family (uncles, aunts, cousins etc.). My father and mum were told by them frequently that I would die at any time so they should not invest any money on me because it was a waste. In 1992, my father died so, it became more harder for my mum to go ahead to provide money for my care as well as to provide for my living. As it is known internationally, the large number of Africa countries does not have a National Health Service (NHS) to support people who are affected by chronic disorders such as sickle cell. The lack of support from the main public body (state) leaves alone parents and their children who are affected by chronic illnesses like my condition. This lack of primary support from Africa government has favoured the increase of this stigma including the rate of deaths of children and adults affected by sickle cell. I remember that sometimes when I went to any public place with friends, people started to speak about my condition by giving examples of people who died somewhere in the city due to the bones disorder as they were labelled and until today. At school it was the same stories around my condition and even teachers were homophobia of it and were not educated on it.
Basically, I have to admit that sometimes when the pains were too painful, I was creaming by saying to my mum “I went to die and why she gave me birth and my mum started crying!”. In Cameroon or in Africa in general, sufferers like myself could be in pain for more than 2 to 3 weeks, sometimes for a month because even to get a liquid perfusion and some painkillers are too expensive, even from small centres or dispensaries; one day treatment could be around £15 and my mum should bring me back the next day for the same treatment. Sometimes, after 3 or 4 days, my mum could not afford to pay for treatments and this led me often to stay at home for more than three weeks to get better. She was carrying on providing me care at home through tradition methods such as a massage with hot water through a towel.
During those sickle cell crisis, I was not eating enough and sometimes at all because I was in pains. As I was not enough dehydrated, the pains were increased some hours after having been received the liquid or perfusion during the day so at night I could not sleep and was crying all night and for days and weeks. My mum could spend days without sleep because she should help me with a hand massage on my back, my hands, my legs etc. No one from my extended family came to help my mum and my brother when they went through to this for years. They were just expected my died before I reached the age of 18. Between 1988 to 2000, this was the bias, well known and promoted by the population regarding people who were suffering of sickle cell.
I am very uncomfortable to talk about my life with sickle cell in Africa because as you may agree, it was like to be in the hell. But, I just came to realise that I should say something about it like I did in France in 2003 because this condition is less mediatised and there is a huge need of campaigning about it as well as to raise the UK’s population awareness of this condition and its complex stigma, which until today exposes millions of children with this condition across the world to a huge psychological and physical torture. As I had mentioned in my book, if it was not an Italian priest in Cameroon, I would be died between 1994 to 1998. This priest had given a chance to be able to fight against this stigma and helped me for my medical needs. And, my mum could say thank you God! This priest spent more than £5,000 to send me in October 1996 to a high Private Superior Institution in the south of Cameroon where I did IT and management in 1998. He said to my mum and brother that it was a way for me to get a chance to get myself later on involved into the society so that I could look after myself as there was not any cure for my condition even in western country. Before he left the country by the end of 1998, he helped me to get my own small computer services and in 1999, I founded the Association of Sickle Cell sufferers of Yaoundé (ADY). In 2000, I was providing an IT trainee to other sufferers with sickle cell but every week, one of our members was dying. I have to mention that this Italian priest before he helped me had appreciated the fact that I was involved on their work as a leader of a group of young teenagers from my city in 1994. And sometimes I was not present to meetings and when they were asking where I was, my brother told them that I was unwell and he was so surprised that for two years I had never mentioned anything about my condition.
I prefer to stop with the above statement on my life with sickle cell in Africa linked to the stigma associated to it. In June 2003 in Paris, during the international conference of sickle cell at the Unesco, later after the meeting, an haematologist Doctor and an association official from Paris who came to me told me that they observed that I did not walked normally and they knew what it was. Since 1998 in Cameroon, I could not play football and very physical sports due to pains that I was having between my hips and it was actually what was called necrosis that I had been raised aware in France. In Cameroon no one or Doctor told me what was wrong with my hips. I was approached by them because I made a testimony, a speech which contradicted the official speech of the official delegation of my country so, at the end of the meeting, some of them were upset and attacked me verbally in front people who were observing especially these people who came to me as to encourage me and said to me they were upset because you said the truth about the real situation of sickle cell in your country.
After my former Consultant Haematologist had read my book, she was one of the first persons to visit me after a surgery and she said “your testimony through your book is pathetic, Mr. Mmounda people would not recognised you in Cameroon”. One of my colleagues’ campaigners with me in the UK who has read the last example of my book in French said ‘this book has to be published in the UK; it is so important to encourage not just people with sickle but people with other chronic disorders’. This book gave me a huge credibility in France within the Sickle Cell network including the production of my hip hop music in 2004 to raise funds. This was how I managed to get help to set up a small specific clinic for care of sickle cell in Yaoundé through medicines and the medical equipments brought from France to Cameroon. In 2005, the centre was opened.
According to the Issue 4 Summer 2010 published by the Sickle Cell Society in London, 2010 marked the 100th anniversary since Dr. James Herrick published his first observations on ‘peculiar elongated cells’; what is now known worldwide as sickle cell anaemia or disease, or long before as “rainy season rheumatism” in western Africa. According to the Association of Sickle Cell sufferers of Yorkshire for Africa and Basic Information (ASYABI), Sickle Cell Anaemia is a genetic illness of the blood which is none contagious and hereditary. It is the result of the abnormal haemoglobin call HBS. Usually people who are affected suffer from pain in the muscles and bones when they have an attack generally calls (Sickle Cell crisis). The same source suggests that there are different form of sickle cell and people who are affected born with the condition and after the age of six months a follow up or medical care has to follow on daily basic to help those (children) who are affected to grow up normally and not to die in the early age due to their condition and its complications. This condition is incurable at this present time.
Dr. Jemima Dennis-Antwi, Regional Advisor (Anglophone Africa), International Confederation of Midwives, who spent 10 years as the health communication specialist behind the first new born screening programme for sickle cell in Ghana, while her presentation at the International Conference linked to the 100th anniversary of the discovery of sickle cell at De Montfort University in Leicester on 14 to 16 April 2010 shown that in Ghana such as in many other Africa countries, children affected by this condition, because of their yellow eyes and the lack of growing up or puts weight normally are said to be witched. She argued that those children are living within a highest stigma and are sometimes rejected by their own families who, shameful may leave their children to face their own fate and expect them to die in the early age. Dr. Jemima concluded that if nothing is done by 2020, the number of new born with this condition in Africa will be increasing by 400,000 every year.
Professor Simon Dyson, Sociologist on Sickle Cell & Thalassaemia, Director of the Unit for Social Study for Sickle Cell & Thalassaemia at De Montfort University, through its book titled “Sickle Cell & Deaths in Custody”, published in 2009 at his public conference on 10th June 2009 raised the stigma linked to sickle cell in Africa “He/she will die tomorrow”.
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