Invitation to the ASYABI Public Conference 2011 in Leeds on Sickle Cell

2011 ASYABI PUBLIC CONFERENCE ON SICKLE CELL ANAEMIA

ON Saturday 20^th August 2011

 

AT

Venue: Wesleyan Church, 10 Laycock place, Chapeltown, Leeds LS7 3JA

                                                                                            

By buses, 2, 3, 3A from Leeds town centre in direction toThomasDanbyCollege, get off at the first bus stop of Chapeltown road andWesleyanChurchis located behind the big shop calls “Continental”.

 

Free parking will be available

 

OUTLINE OF THE DAY

 

    2:30- 3:00pm           Registration & Opening of the event

 

    3:00pm                     Introductory speaker, Denis Hodge, radio presenter –UK country Radio.com                                  

    3:05pm                     Word of welcome, Mr. Georges Tankou, ASYABI General Secretary

 

    3:10pm                     A parent/carer testimony, Mrs. Judith Lekélé

 

    3:15pm                     Living with Sickle Cell in the UK, Mr. Ajay Dattani, Chairman of Oscar Birmingham 

 

    3:25pm                     A patient testimony, Mr. Chiamaka, a sickle cell sufferer

 

    3:30pm                     Living with Sickle Cell in Africa, Mr. Olivier Mmounda, ASYABI Chairman

 

    3:45pm                     Break-time & coffee will be available  

 

    4:00pm                     New updates of Department of Health-Sponsored Project on Comprehensive Care, Dr. Asa’ah Nkhokwo, Nationwide Adviser & formerly CEO of the Sickle Cell Society

    4:30pm                     National Prospective of patients, Mr. Kevin Dunkley, Chairman of PNSG

 

   4:40pm                      Questions for all speakers

 

   4:55pm                      Music in Live (Harmony Choir & Olivier Hip hop music etc.) & fund raising.  

 

   5:40pm                      Refreshment

 

   5:45pm                      Close

 

q       Cost:  Free of charge with free donations. All proceeds in support to our work.

NB: It is open to anyone who wants to attend. Places are limited so, please book a place by filling in the booking form or request it to us by email: sicklecellyorkshireasyabi@yahoo.fr or just test your name on 074921012 and add a place for the conference if we do not get back to you, it means that you get a place.

My life with Sickle Cell in Africa and the stigma that I went through because of my condition

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 100^th 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 100^th 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 10^th June 2009 raised the stigma linked to sickle cell in Africa “He/she will die tomorrow”.  

Please help us my charity in support to those children who are living with that condition in Africa.

All donations online are welcome on:

HSBC Bank 41338285 Sort code 40 27 10 if it is by cheque, please make it payable to: ASYABI

Many sickle-cell deaths in Africa may be avoidable

Many sickle-cell deaths in Africa may be avoidable

Health

11 Sep 09

Children in Africa with sickle cell anaemia may be dying unnecessarily from bacterial infections.

Children in Africa with sickle cell anaemia are dying unnecessarily from bacterial infections, suggests the largest study of its kind, led by Oxford University researchers.

The study, funded by the Wellcome Trust and published in The Lancet, has prompted calls for all children in Africa to receive vaccinations against the most common bacterial infections.

Sickle cell anaemia affects millions of people worldwide, but more than 80 per cent of cases are in Africa where 200,000 children are born with the disease every year. It is a genetic disease which leads to the formation of sickle-shaped red blood cells. These cells do not pass easily through blood vessels and can form clusters which block the flow of blood to limbs and organs, leading to pain, serious infections and organ damage.

Despite the huge number of children who are born with sickle cell anaemia in Africa each year, the diagnosis is often delayed and 90 per cent of these children die before the disease is ever diagnosed. It has long been assumed that severe infections are responsible for many of these deaths, but this has never been properly investigated.

Researchers at the Kenya Medical Research Institute (KEMRI)-Wellcome Trust Programme in Kilifi, on the coast of Kenya, set out to find out the scale of the problem in Africa.

The team, led by Dr Tom Williams, a Wellcome Trust Senior Fellow and Reader in Tropical Medicine at the University of Oxford, studied blood samples from all children aged under 14 who were admitted to the local hospital during a 10 year period between 1998 and 2008. They screened for cases of bacteraemia (bacterial infections of the blood) and then tested the positive samples for sickle cell anaemia.

By screening almost 40,000 admissions to the hospital, the researchers identified more than 2,000 cases of bacteraemia. While in the general population less than three in 1,000 children were found to have sickle cell anaemia, this figure increased more than 20-fold – to over 60 per 1,000 – for children admitted to hospital with bacteraemia. This confirms that, as in the developed world, African children with sickle cell anaemia are at huge risk of bacteraemia.

Our study provides strong impetus for the introduction of vaccination programmes for all children in Africa.

Dr Tom Williams

Amongst the most common causes of bacteraemia amongst children with sickle cell anaemia were Streptococcus pneumoniae (accounting for 41% of cases) and Haemophilus influenzae type b (12% of cases), both of which are preventable by vaccination.

Dr Williams commented: ‘Our study provides strong impetus for the introduction of vaccination programmes for all children in Africa, a move that will dramatically improve the survival chances of children born with sickle cell anaemia. Health policies need to be based on solid evidence such as this research, rather than on rumour and personal preference.’

The researchers estimate that in Kilifi, it is likely that up to one quarter of all child-deaths are attributable to sickle cell anaemia, with bacteraemia accounting for a sizeable proportion.

Developing countries are working to reduce childhood mortality to meet one of the Millennium Development Goals. However, the focus is on the major causes of mortality – more than 70 per cent of child deaths every year are attributable to six causes: diarrhoea, malaria, neonatal infection, pneumonia, preterm delivery, or lack of oxygen at birth. As childhood mortality falls, Dr Williams believes that the relative contribution of sickle cell anaemia will increase without the development and implementation of specific interventions.

‘To date, sickle cell anaemia has not enjoyed a high priority on African health agendas, despite the relative impact it has on childhood mortality, which far exceeds estimates for HIV,’ he says. ‘HIV commands vast attention from the international community, yet sickle cell anaemia is virtually invisible on the international health agenda.’ 

 Source: http://www.ox.ac.uk/media/news_stories/2009/090911.html

Royaume Uni le monde de la Drépanocytose rendra hommage à Madame Sonia Lindsay !

Directrice de Projet de l’Organisation de Soutien aux Drépanocytaires et Thalassémiques et de Recherche (OSCAR) ; Mme Sonia avait consacré à plus d’une vingtaine d’années au service de cette pathologie à travers des actions concrètes que son association menaient pour la promotion de cette maladie et en particulier de soutien psychologique aux patients et leurs familles dans l’une des grandes villes du Royaume Uni (Birmingham). Deux semaines avant son décès prématuré lors d’une collision alors qu’elle était dans un véhicule avec des amis de retour d’une visite amicale dans la ville de Leeds. C’est ainsi qu’elle nous quitta pour l’au-delà ; Mme Sonia nous quitta de façon tragique et inattendue alors qu’elle devrait être l’une des conférencières du Weekend de Récréation de Drépanocytose sous le thème «Tous ensemble malades drépanocytaires du Royaume Uni! ». Cet évènement qui avait été planifié en date du 21 et 22 Aout 2010 dans l’une des villes du Royaume Uni devrait accueillir une cinquantaine de délégations, responsables et représentants des  associations de Drépanocytose de toutes les villes du pays.  Hélas, la disponibilité de Mme Lindsay n’avait pas pu être physique ; le destin du Dieu Tout-puissant en avait décidé différemment. Au nom de l’Association des Drépanocytaires du Yorkshire pour l’Afrique et l’Information de Base (ASYABI) dont je suis Président et était le promoteur dudit évènement, je lui rend ici en mon personnel et au nom de toute l’ASYABI un hommage mérité. Mme Sonia laisse un grand vide dans ce combat pour la reconnaissance publique et internationale de notre cause qui jusqu’ici reste une cause marginale auprès de la communauté internationale. Cette Grande Dame de part de ses actions, il y’a quelque mois avait  eu un titre honorifique au sein du milieu associatif de drépanocytose à savoir « L’une des Reine de la Drépanocytose ». Je garde personnellement un souvenir inoubliable de la part de cette Dame qui avait appréciée mes idéologies à travers ma jeune association (ASYABI) qui à cette période n’était pas très appréciée par certains individus influents dans le réseau et en particulier son leader que je suis.  Lors de notre première rencontre dans le cadre d’une conférence sur la Drépanocytose au mois de Juin 2009, elle demanda que je sois toujours invité et impliqué aux différentes rencontres liées à notre cause. Elle supportait mes idéologies malgré les regards très discriminatifs de certains acteurs associatifs et scientifiques dans ce domaine qui priment plutôt leurs intérêts personnels et égoïstes. Elle restera à tout jamais graver dans ma mémoire et une fois de plus, la conférence Annuelle de 2010, organisée par mon association au mois d’Octobre lui avait été dédiée !   

Le Vendredi 27 Aout 2010, une centaine de représentants et responsables d’associations de Drépanocytose du Royaume Uni s’étaient alliés à sa famille et amis pour lui rendre un dernier hommage mérité à l’Eglise du Nouveau Testament de Dieu dans sa ville de résidence à Birmingham et son inhumation avait prit place au cimetière de Oxhill dans ladite ville. Deux semaines avant son décès, elle avait reçu un Prix Nobel lié à son dévouement à la lutte contre la Drépanocytose au Royaume Uni.

Rédigé par,

Olivier Mmounda

Président de l’ASYABI &

Directeur de la Communication

www.asyabi.co.uk

UK the world of Sickle Cell will pay tribute to Mrs. Sonia Lindsay!

As some of you may be aware, on Sunday 1^st August 2010, the Voluntary Groups on sickle cell in the UK had lost Mrs. Sonia Lindsay, Project Manager of the Organisation for Sickle Cell Anaemia Relief and Thalassaemia Support, known as Organisation for Sickle Cell Research and Thalassaemia Support known as “SCAR Birmingham”. Mrs. Lindsay had given a huge attention to the sickle cell struggle with over twenty years experience working on this field. Two weeks before her premature death in a car crash, in which she was sit with friends on her way back to Birmingham where she lived, she had received an Award for her gorgeous commitment on sickle cell through her organisation. Mrs. Sonia had been called so far by some sickle cell sufferers and representatives of sickle cell organisations “one of the Queens of the Sickle Cell struggle”.

The ASYABI Annual Conference 2010 in Leeds in October had been dedicated to her. As you may know, Mrs. Sonia should be one of the speakers of the ASYABI  planned Recreation Weekend for Sickle Cell & Thalassaemia on 21 to 22 August 2010 titled “Coming together Sickle Cell disease sufferers of UK! But, God fate had decided differently. Mrs. Sonia was one of the main person who really appreciated my commitment and my ideas through the ASYABI and she was one of the main persons to invite me to the 15^th July 2009 meeting for Voluntary Groups on Sickle Cell in the UK and at that time, she had arranged my travel expense.

Her funeral took place on Friday 27 August 2010, at 10:30am at the New Testament Church of God, 244 Lozells Road, Birmingham B19 1NP. She was burred at the Handsworth Cemetery, Oxhill Road, Birmingham B21 8JT. 

You will never be forgotten in our heart; your soul rest in peace our dear Queen!

Report made by,

Olivier Mmounda

ASYABI Chairman &

Communication Director

www.asyabi.co.uk  

asyabi.wordpress.com

Report of the ASYABI CONFERENCE IN LEEDS ON SATURDAY 6 NOVEMBER 2010

As planned, the ASYABI conference, took place in Leeds on Saturday 6th November 2010 with a large number of speakers from different background include scientists of the field such as Dr. Asa’ah Nkhokwo, Former Executive Chief of the Sickle Cell Society in London, Nationwide Adviser on Comprehensive Care and Technical Adviser of the Department of Health on Comprehensive Care, who did a presentation on the new updated on Department of Health-Sponsored Project on Comprehensive Care, in which an early indications suggest that “there is an urgent need to strengthen the infrastructure of patient groups around the country”. This event was mainly dominated by the frontline (patients) such as , Mr. Ajay Dattani, Young Actor living with Sickle Cell in the UK and Chairman of the Organisation for Sickle Cell Anaemia Relief and Thalassaemia Support (OSCAR Birmingham); his gorgeous testimony on his life had underlined the several challenges that he had so far facing before he found the confidence of joining the theatre field later and he is involving in some projects with schools and young people, but he is more optimistic today about his condition and he wants to encourage other sufferers to come out with a new perception. Then, Mr. Kevin Dunkley, a sickle cell sufferer and Chairman of the Patient Network Support Group (PNSG) had summarised his work of bringing together sufferers of the same condition for a strengthen and self believe for a strong and solid communities that he believes will bring a lot of changes into the sickle cell campaigns. Finally, the ASYABI Chairman Mr. Olivier Mmounda, had first of all thank his guests for their strong commitment of supporting our common and marginal cause through this long journey of trip to Leeds made by the representatives of Sickle Cell organisations across the UK to support the ASYABI’s event, which he believes will inspire progressively other sufferers of Leeds and Yorkshire to put behind them the stigma that they face on their daily basis and they may understand that the only solution of fighting against it is to share those challenges with their communities and the UK society which for many do not know anything about it and even about sickle cell. He had concluded that such powerful testimonies made by experienced sufferers like Mr. Ajay and Kevin should be used as an instrument of prove that there are some sufferers who can provide a strong advocacy to the communities and bringing together sufferers of the same condition, which until today is not supported enough by other sufferers who suffer from a stigma. He had also on his presentation on ‘Living with Sickle Cell in Africa’ raised the concern of that “it is vital to raise our communities and the UK population awareness of our condition but it is also important to highlight the international figure of the sickle cell, which affects about 200,000 new born every year in Africa where 80% of cases are living and dying without assistant”. This event had also been supported by the OSCAR Sandwell in West Bromwich through their Centre Manager Ms. Rachel McFee who was their representative at this meeting. Mr. Georges Tankou, ASYABI Secretary, in his word of welcome had thank you the importance, which is given to sickle cell by several scientists and personalities through the All-Party Parliamentary Group for Sickle Cell and Thalassaemia (APPG), in which some MPs are involved to defend and raised Parliament awareness of this condition. He took that opportunity to thank this institution for their work, which clearly contribute to the strengthen of the Network of Sickle Cell Organisations across the UK through the meeting that they are sometimes holding around sickle cell in the House of Common and this year, the ASYABI has had this privilege to be invited to the November 2010 meeting that Mrs. Diana Abbott, MP and Chair of this institution will be holding to discuss the changes that are taking place in the NHS and how these will affect patients with sickle cell and thalassaemia. The video of this event will be soon available in our website in the beginning of December 2010.

Report made by,
The Communication Team of the ASYABI,

APPG Reception in the House of Common On Tuesday 16 November 2010, under the Chair of the Shadow Health Secretary

The All-Party Parliamentary Group for Sickle Cell and Thalassaemia (APPG) was set up in 2008, with the main aim to raise Parliament awareness of Sickle Cell and Thalassaemia. Under the Chair of Mrs. Diana Abbott, MP, Shadow Health Secretary and Chairman of the APPG. As to strengthen the fight against this condition, every year, this Sickle Cell & Thalassaemia institution, which involved MPs of All-Party Parliamentary, is offering a Parliamentary reception in the House of Common. The 2010 reception took place on Tuesday 16th November where Mrs. Abbott had underlined the importance of strengthen the struggle, which despite the efforts of some well known sickle cell organisations in London such as the Sickle Cell Society and the UK Thalassaemia Society, this condition is still not known by some health professionals include GPs from the central of London. She had mentioned the recent died of a 3 years old sufferer of sickle cell in London, where the health professionals should be capable to deal with sickle cell crisis and its complications. She made a personal statement regarding her involvement within the sickle cell campaigns through a friend of her who has had a child with sickle cell and how stressful she was when she was explaining her daily basis life and woke up in the middle of night due to the sickle cell crisis of her child. She concluded her sentence with a strong emotional temper linked to that testimony and said “I could not stay indifferent to the stressful state in which my friend was constantly”. I wonder, how the common genetic condition in the UK such as Sickle Cell has less attention than other conditions, which are less common but have more attention and support. She thanked all the efforts made by researchers of that field and the campaigns lead by sickle cell organisations across the country and also invited us to carry on with those campaigns for sickle cell to be heard by the largest number of the UK population.

Report made by,
Olivier Mmounda,
Representative of the ASYABI at this meeting