Living with Sickle Cell and the stigma that I went through!
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 largest population inCameroon. When I was in the primary school, my classmates were going away from me because they believed that I could fall at any time and they could attract my illness. They attributed my condition to Epilepsy and they were homophobia to contract it.
According to my mum, I’ve started having sickle cell crisis (pains in the bones) from the age of 5 and pains were so severe at that time and regularly came through with malaria. Sometimes when coming back to school with my brother and classmates, I was falling on the street constantly and even at school and I could not walk and my classmates were abandoning me with my brother. Any change of the climate was provoking my pains such as, cold temperature or very hot temperature. My father and my mum were called or sometimes people brought me to the nearest hospital and my mum and my dad were calling from there or sometimes someone was going home with my young brother to inform my parents that I was in the hospital and should go to pay the bills. My life with sickle cell was so hard that even when I went to the high school, I was stigmatized by my classmates and neighbours including my extended family (uncles, aunts, cousins etc.). My father and mum were told by them frequently that I will die at any time so they should not invest any money on me because it was a waste. In 1992, my father passed away so, it became more difficult for my mum to provide money both for my medical needs and my education including for my daily needs. As it is known internationally, the large number ofAfricacountries does not have a National Health Service (NHS) to support people who are affected by chronic illnesses such as sickle cell.
The lack of support from African governments’ leave alone parents and their affected children facing these daily basis challenges without any support and structures to assist them. This lack of primary support fromAfricagovernments had favored the increase of this stigma including the rate of deaths of children and adults affected by sickle cell disorder. E.G. I remember that sometimes when I went to any public place with friends, people started to speak about my condition by giving examples of a teenager with sickle cell who passed away somewhere in the city due to the bones disorder as they were labeled it and added that ‘Olivier is going to pass away soon and before he reach the age of 15′. At school it was the same stories around my condition and even teachers were homophobia about it and were not well raised awareness of this condition.
Basically, I have to admit that sometimes when the pains were too painful, I was creaming by saying to my mum “I want to die and why she gave me birth and my mum started crying”. InCameroonor inAfricain general, sufferers like me 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 and for the large cases of sickle cell, parents cannot afford carry on paying for long hospitalisations. So, after a few days, their children are discharged with their sickle cell crisis and parents have to assist them with traditional methods such a massage with hand with tower and a hot water. I remember that my mum, my brother and my niece were staying sometimes for weeks massaging me or holding me in a specific place where the pain was so hard.
From 1995, It is with the help of missionary priests in Yaoundé that I started to think differently because for years, they started to help me both for my medical needs and my education and I especially do remember one of them who said to me in 1996 that ‘Olivier, me too I’ve got a chronic heart condition…there are some days in which I am unwell and when I am well, I am fulfilling my duties of Priest and Director Vicar. You can do as anyone with your condition; when you seek…ok fine but when you are well, you can carry on doing what you have to do such educating yourself, take part to young initiative as you are now the President of young teenagers for our centre so some of your friends found you intelligent and that’s why they have elected you so, my son you have a lot to give even if sometimes your condition can be a barrier but you can become a director tomorrow and when you are unwell, other people will work for you…just believe in yourself like the young Saint Dominic Savio’. With the advice of this Italian’s priest who was also given to me books with spiritual advice on self-confident and how to understand other; this is how in the end of 1996 with his huge financial help I left my close family and went to do my further education in the South of Cameroon at the Institute Superior of IT; a private school held by Italians, where I did IT and Management from October 1996 to 1998 and I graduated. But it was so hard for me to be employed despite the fact that during works placement, I was always between the first five selected people but I was always rejected politely because of my chronic condition. This held me from 1999 and with religious help to set up my own IT services and training for the general public and the end of 1999; I founded the Association of Sickle Cell sufferers of Yaoundé (ADY), the political capital of Cameroon and this organization became a registered charity in Jun 2000 and I was the National Chair.
However, despite that my health was a little bit improving than my teenager’s battle; I was still believed that I am going to die before I reach the age of 25. With the huge support of foreigners’ individuals and local support, my charity became popular and this led me to be invited in Paris (France) in June 2003 for an international conference for sickle cell at the UNESCO. I must admit that this meeting with had totally changed my life and perception because I could hear from experts on my condition that a sickle cell like myself could survive with his illness if there is a proper medical follow up! I even wrote a book about my life with sickle cell in Africa published in Parisand distributed by a sickle cell charity in Parisknown as ‘SOS Globi 94′ and I also produced cd music to raise fund to set sickle cell clinic in Cameroonthat I managed to open in Yaoundé in 2005. Francehad changed my life and perception at the time! After my former Consultant Haematologist doctor in Paris had read my book, she was one of the first persons to visit me after a surgery that I had had. And she said “your testimony through your book is pathetic, Mr. Mmounda people would not recognize 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’.
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 forAfrica 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 inAfrica 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”.
Please help us to carry on with this charitable work in support to those children and adults with sickle cell and Thalassaemia in theUK.
All donations online are welcome on through Locagiving link or make direct donation at:
HSBC Bank 54721349 Sort code 40 27 15 if it is by cheque, please make it payable to: ASYABI UK