This ASYABI video of November 2010 has been made in Leeds to strengthen our campaigns on our condition and to raise funds to buy medical equipments for a Sickle Cell Clinic in Africa. Please help us to raise the amount of £72,656

Did you know? There are 15, 000 Sickle Cell sufferers and 1000 patients with severe forms of Thalassaemia in the UK. 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). In October 2008, the All-Party parliamentary Group on Sickle Cell and Thalassaemia (APPG) had been set up to raise awareness of the conditions in Parliament.

Facts in the UK:

• 240, 000 people are carriers of the Sickle Cell gene.
• 300 babies are born annually with Sickle Cell Anaemia or Disorder (SCD).
• Each year hundreds of children & adults will be left disabled or chronically sick.
• Hundreds will spend months in hospital or isolated at home.

Appeal for donations in support to a Sickle Cell project in Africa from the General Secretary & Co-Founder of the ASYABI

Dear supporters, Sir/Madam,

On behalf of our Sickle Cell organisation well known by some of you as “ASYABI” in Leeds, firstly I would like to inform you that the video of the ASYABI annual public conference of 6th November 2010 is now available in our website. One of the great parts of this video is the hip hop music by the Chairman and Founder of our organisation, Mr. Olivier Mmounda.

On behalf of the project, I would like to pay respect to Mr. Mmounda for his strong leadership and professionalism of leading the ASYABI so far in term of achievement through local and national recognition such as in the network of the sickle cell in the UK as well as in the highest level of the fight against this condition through the All-Party Parliament Group set up in 2008 by MPs and the Shadow Public Minister, Mrs. Diana Abbott MP. She is the Chair of this institution. On 16th November 2010, Mr. Mmounda, on behalf of the group was invited at the Westminster Reception organised by this institution. We thank those MPs who are given their time to raise Parliament awareness of this condition despite their full agenda.

We would also like to say thank you to those voluntary groups, which for decades have been campaigning for this cause such as, Oscar Sandwell in West Bromwich, Oscar Birmingham, the Patient Network Support Group (PNSG) in Birmingham and many other organisations, which are doing this valuable jobs on behalf of thousands of children and adults who suffer from this condition in the UK.

However, the struggle still continue and therefore, my colleague Olivier is multiplying his endeavours to strengthen campaigns for this condition that he suffers himself and his eleven years of international experience on his cause is clearly helpful and useful not just for the ASYABI but for the improvement of campaigns on behalf of those who are living with this condition in the UK. Formerly a national Chairman 1999-2003 of a patient group in the political capital of Cameroon (Yaoundé), 2003-2004, representative of Cameroonian sufferers of sickle cell at the international conference for this condition at the Unesco in Paris and one year of experience exchanges with sickle cell organisations in Paris (France) and formerly manager of a small clinic for sickle cell care in Yaoundé, between 2005-2007, which was opened by him through the production of his hip hop music in Paris in 2004 and the publication of a book titled “To marginalise yourself by creating your own society or to deal with your disability”. These productions had assisted him in raising funds to set up a clinic with the help and collaboration of some sickle cell organisations in France such as the Federation of Sickle Cell sufferers and Thalassaemia (FMDT) in France. The Frenchman, Sir Christian Godart, currently Honour President and formerly Treasurer of the FMDT in Paris, in their review stated “We met one day at the Unesco conference a sickle cell sufferer not like others…even when Olivier was rudely attacked in front me for his contradiction to the official delegation of his country for his speech on the real situation of those with sickle cell in his country of origin and the lack of commitment of the authorities, the next day Olivier spent months in hospitals requiring him to have three surgeries, which had involved two hips replacements, but Olivier would not cry even if the situation is deteriorated or deplorable; he raised a concern and after his surgeries in Paris in December 2003, to persuade us to support his projects for those with the same condition like him, Olivier produced a cd music and wrote a book on his life with the condition…we could see that he is not a man of words but someone who acts and you could just support his actions because he is a man with moral value and an honest man with a huge passion for his humanitarian action for others with the same condition like him”. One of his former colleagues, currently a national chairman of a sickle cell patient group in Cameroon described Olivier as a hope for thousands of sufferers in Cameroon and in Africa. Myself, I had joined him in this struggle because I had lost some of my close relatives with sickle cell in Africa and I consider Olivier as a great ambassador for those with this condition in the UK and a route of concrete support for those thousands of children and adults who are dying due to the lack of adequate care in Africa. His experience and knowledge on the field as a campaigner and sufferer are clearly visible through his actions.

Sickle Cell Anaemia affects 200,000 new born every year in Africa where 80% of cases are found. It is crucial to point out that if nothing is done by 2020, this number will be raising by 400,000 every year. Hundreds are dying every day and thousands every year. Olivier, Chairman of our organisation has recently been described by some Tutors and students from the Leeds City College where he is currently doing an Access Course for Higher Education (A.H.E.) on Humanity as “an inspiration for others”. He has recently received an offer for a place for September 2011 on Broadcast Journalism course by two universities in the area of Yorkshire. The Programme Manager of the AHE / ParkLane Campus has been sufficiently impressed by my colleague work and he has agreed to arrange for Olivier to do a large presentation by the end of May 2011, in which A Level students will be invited to take part. This ASYABI new video 2010 above will be watching as part of his presentation as it does content testimonies from sufferers themselves such as Mr. Ajay Dattani, campaigner and Chairman of one of largest UK’s voluntary group for Sickle Cell and Mr. Kevin Dunkley, campaigner and Chairman of the Patient Network Support Group. This video will be also suggested to local channels TV in the Yorkshire for a large campaign of raising awareness of this strong stigmatised condition.

At this present time, the ASYABI is launching an appeal for donations to be able to buy the medical equipments below to support a sickle cell project in Africa. We appeal for donations of any kind, which could be financially, materially, etc. We are hoping to raise the amount of £72,656 to buy and ship these equipments. I prefer not to comment on the honesty that our organisation through the leadership of Mr. Mmounda has proved so far to local funders through a clear account with proven with receipts when requested so any pence or pound that you will donate will be very helpful for those sufferers in Africa. Our organisation main aim is to raise people awareness of this condition in the Yorkshire – UK as well as to help Africa charities on this painful condition.

On the strength of the above, I only hope that once you will see how passionate and attached we are for this cause, through the video above; with all your heart, you will not hesitate to support our marginalised and stigmatised cause and even forwarding this request to your network and contact. To understand the complexity of living with sickle cell in Africa, please see extract testimony of my colleague Olivier on its life with his condition in Africa. The full book will soon be published in the UK. This extract of his testimony is available on the wordpress/blog below. The needed medical equipments list and prices are listed below.

All donations online are welcome on:
HSBC Bank account number 41338285 Sort code 40 27 10 if it is by cheque, please make it payable to: ASYABI

NB.: Required medical equipments:

Electric and solar binocular microscope with accessories * 1 = £911
Microscope triloculaire with accessories * 1 = £4,202
Complete device of electrophoresis with densitometer * 1 = £6,303
Portable device of echography delivered with probe * 1 = £7,704
Mobile device of radiography * 1 = £13,306
Printer for echography * 1 = £1,401
Probe for echography * 1 = £3,502
Weigh anybody adult maximum range 160 kg * 1 = £50
Weigh baby with plates * 1 = £106
Extractor (concentrating of oxygen) 4L/H * 1 = £3,502
Electric centrifugal machine with 8 tubes * 1 = £631
Modern beds of hospitalization with changing bust * 20 = £7,003
Count of stainless steel childbirth * 2 = £1,501
Universal hydraulic operating table * 1 = £4,902
Limp of small surgery * 1 = £64
Limp of average surgery * 1 = £771
Limp with bandage * 1 = £50
Refrigerator for bank of blood * 1 = £6,303
Rotary agitator for serology * 1 = £603
Magnetic stirrer * 1 = £421
Meter haematology with 5 keys * 1 = £316
Automat of haematology to 19 parameters * 1 = £9,104

Total: £72,656

Many thanks for your help.
Yours faithfully,

For the ASYABI Team,
Georges Iréné Tankou
ASYABI General Secretary,
Co-Founder & Accountant
Currently working for one of the NHS Hospitals in the Yorkshire

About The Founder of the Association of Sickle Cell sufferers of Yorkshire for Africa and Basic Information (ASYABI)

The Association of Sickle cell sufferers of Yorkshire for Africa and Basic Information (ASYABI) was founded by Mr. Olivier Mmounda A N. on the above portrait picture who is a sickle cell sufferer. He has Sickle Betathalassaemia, his Betathalassaemia is similar to Sickle Cell Anaemia. He is a French speaker from the political capital of Cameroon (Yaoundé) where he was born in 1979 and went to Primary School and High School. Since 1997 he was graduated from a private Italian Superior Institution in the South of Cameroon. He has eleven years experience on Sickle Cell work and campaigns. Formerly National Chairman 1999-2003 of the Association of Sickle Cell sufferers of Yaoundé. 2001-2002, IT tutor of sufferers in his own company on public IT service in Yaoundé. June 2003, representative of Sickle Cell Disease sufferers of Cameroon at the International conference on Sickle Cell at the Unesco in Paris where he had made a speech about the real situation of the Sickle Cell in his country. To support his project in France, he wrote a small book on his live with Sickle Cell in Cameroon titled “To Marginalise yourself by creating your own society or to deal with your disability”, published in 2003 in Paris by a Priest and distributed by the SOS Globi 94 now known as “Federation of Sickle Cell sufferers and Thalassaemia (FMDT)” and one year experience exchange with Sickle Cell charities in France. 2005-2006 Manager of a small clinic for Sickle Cell Care; opened in Yaoundé through a CD music made in Paris by him to raise funds with the help of other charities of Sickle Cell. In June 2008, he founded the ASYABI in Leeds to raise people from Leeds and Yorkshire – United Kingdom awareness of this condition. As achievements in the United Kingdom to go ahead with his work, 2009-2010, IELTS for accessing University, Level 2 in literacy, equivalent of GCSE English. 2010-2011, Level 3 on Humanity – Access to Higher Education. 2011-2012, an offer has been given to him in Broadcast Journalism. Other professional trainings, 2008-2009, Level 1 & 2 in IT. A Foundation Level 4. He is sometimes invited across the United Kingdom by other Sickle Cell organisations & associations to give a presentation on "Living with Sickle Cell in Africa". In 2009, trained as a Reviewer by the Peer Review of UK Forum for Blood Disorders (NHS). On the volunteering basis, he travels when needed across the UK as one member of the team Review on the Sickle Cell field which consist of visiting the Sickle Cell Services or Haematology Clinic for a review with the staffs and service users (patients and their families).

Beside his role as the Chairman & Project Manager of this Sickle Cell charity, he is a writer, blogger, an hip hop singer, presenter of any kind of event in French and in English, such as, social, cultural, evenings, etc. The video above has some of his performances. This part of his activity is focused on helping those with sickle cell like him in Africa where there are 200 000 new born every year; if nothing is done by 2020, this figure will be increase by 400,000 new born every year. Hundreds are dying every day and thousands every year. He can perform his hip hop music for charitable purpose at any events especially if Sickle Cell can be involved. Since the creation of his blog at the end of 2008, he has received nearly 2000 readers comments. Every week, 39 to 46 comments are coming in. Recently, his blog has been attacked by malicious; but it is now available on: www.asyabi.wordpress.com Please feel free to contact him for this purpose on: anyam2008@yahoo.co.uk & you can donate directly through our account bank below to support our actions for Africa. Currently we looking for buying some medical equipments for a Sickle Cell charity in Africa. Pictures of the required medical equipments will be seing on this website. Please do help us. To understand deeply what is it like to have sickle cell in Africa, please go to the blog/wordpress to see the testimony of Mr. Mmounda on his life with sickle cell in Cameroon.

All-Party Parliamentary Group For Sickle Cell and Thalassaemia (APPG)Reception in the House of Common On Tuesday 16 November 2010, under the Chair of the Shadow Health Secretary

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

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

“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, ASYABI

OSCAR SANDWELL ANNUAL Conference On Friday 2 July 2010 in West Bromwich

Founded in 1975 by a sufferer, the Organisation for Sickle Cell Anaemia Research (OSCAR) which is based in West Bromwich, Sandwell in the UK, has already achieved many success on their actions for those who are affected by Sickle Cell Disease and their families. OSCAR Sandwell in West Bromwich has main aims to improve public and professional awareness of the disease, supporting individuals affected and their families, promoting biochemical research and raising funds to achieve their goals.

To go ahead and to succeed on their activities as to involve the Sandwell communities, OSCAR Sandwell always offers to their members and the Sandwell population an Annual Conference in which they provide useful and helpful information around Sickle Cell; their recent conference on Friday 2nd July 2010 has welcomed speakers from different regions of the UK with different background, patients representatives of Sickle Cell organisations like Mr. Kevin Dunkley, Chairman of the Patient Support Network Group (PSNG) which is based in Birmingham and that organisation has been initiated by him in 2007 to bring together sufferers through his network, Mr. Olivier Mmounda, Chairman of the Association of Sickle Cell sufferers of Yorkshire for Africa and Basic Information (ASYABI) and scientists campaigners of that field like Dr. Asa’ah Nkohkwo, Nation-wide Adviser on Comprehensive Care.

All the speakers had had about 15 to 25 minutes to present their varieties topics on Sickle Cell and the challenges that those with sickle cell face in the UK. Miss. Rachel McFee, Centre Manager of that structure was the conference overview and we were so impressed by the way that she was involving the audience for questions about the presentations and on making personal point of view. One of the amazing new comment was the testimony made by His Majesty, one of the Traditional Chiefs of First Degree from the West of Cameroon, who said to have twelve wives, on his testimony of three to five minutes after Mr. Mmounda presentation on “Living with Sickle Cell in Africa”, he said that “he confirmed that what Mr. Olivier has said about the stigma, the lack of basic knowledge on the disease, the lack of commitment from the health authorities etc. are true, he has added that he could not believe that Mr. Mmounda himself has sickle cell and he is from Cameroon...he said that he first wondered once Dr. Asa’ah told him that Olivier has got sickle cell was how Olivier has not died yet...he is still alive at this age because in Cameroon when you have a child with that condition, everyone is expecting that child to die at any time and we know that they do not get adults for the most of them except those who are in Europe”. His Majesty, came along with Dr. Asa’ah as he was going to an international conference on the Forests in one of the Europe countries (Canada) and came in England for a departure and when Dr. Asa’ah has informed him that he should attend a conference on Sickle Cell then, he had decided to attend the meeting because he had lost three children with that condition in Cameroon.

Basically, the OSCAR Sandwell Conference 2010 was an amazing event which has offered some new updated information to their members and their public about the realities of the sickle cell in Africa and the challenges that affected people in the UK are getting through include the national picture of the disease presented by Dr. Asa’ah. We had also during the conference two endearing personal testimonies from Mr. Clive Hicks and Mr. Ron Walker, both parents living with Sickle Cell disease and they have both above forty years old and live with the condition could be more seen as an example for other sufferers in the UK.

Report made by the ASYABI in collaboration with Oscar Sandwell

AS PREVIOUS THE INTERNATIONAL CONFERENCE ON SICKE CELL TOOK PLACE IN LEICESTER IN THE UNITED KINGDOM WITH THE THEME: "Sickle Cell: The Next 100 Years". On Wednesday 14th to Friday 16th April 2010

The International Conference on Sickle Cell Disease took place as planned in Leicester in the UK, near the capital. The theme of the conference was ‘Sickle Cell – The Next 100 Years’. Numerous delegates took part in this event, among them scientific and personal delegations from all corners of the USA (Washington, Texas, California etc.) several varied delegations from the so-called tropical continent (Ghana, Nigeria, Kenya etc.) numerous scientists and representatives from Sickle Cell associations of the UK, Canada, Scotland and Ireland were also present.

Comme prévu, la conférence internationale sous le thème "Drépanocytose Les 100 Prochaines Années" avait eu lieu dans les locaux de l’Université De Montfort à Leicester au Royaume Uni près de sa capitale londonienne. De nombreuses délégations avaient prit part à cet événement. L’on avait vu entre autre des délégations scientifiques et civiles de tous les coins des Etats Uni d’Amérique (Washington, Texas, Californie etc.), des délégations variées et diversifiées du continent dit tropical (Ghana, Nigéria, Kenya, etc.), de nombreux scientifiques et représentants des associations de drépanocytose du Royaume Uni, Canada, Ecosse, Irlande étaient également présents.

Some pictures of the Actions made in Africa

Images of the clinic opened at Yaoundé the political capital of Cameroon in November 2005.

In 2006 in the Clinic, Olivier Mmounda as the manager and his staff offered a conference.

By donating us, you help a Sickle Cell sufferer. This disease kills hundreds of patients everyday in Africa because most of them come from poor families.

to help us, please you can donate online at: HSBC Bank
ASYABI 41338285 Sort code 40 27 10 If it is by cheque, please make it payable to: ASYABI

Why the ASYABI has been founded?

Firstly, as sickle cell sufferers who have had the disease since we were born and are originally from Africa; we remember how it was so hard to be a Sickle cell sufferer in this continent. Thousands of our sisters and brothers with the disease die every year. As Sickle cell sufferers originally from this continent where we received our primary and secondary education, we remember how it was very difficult for us due to our condition and poor medical services as we did not have (NHS) National Health Services in the most countries of this continent.

Sickle cell anemia is a chronic disease which needs daily treatment but, most patients come from the middle classes and the biggest number comes from poor families so, as a result, they die because they cannot have all the treatment that they need. The reality is that this is not true. Asyabi would like, firstly, to provide true information by the angle of testimonies of African patients who have experience of this and live in the UK. The truth is that Sickle Cell is not taking in consideration like the others international diseases.

Secondly, to provide financial support to African charities of Sickle cell anemia.

Finally, our motivation comes from our illness; basically, we want to educate and inform people living in the UK about the disease and tell the truth about the real situation of the average patients who live in Africa through testimonies from us as patients with the disease. We really think that our testimonies as patients will have more impact on the people of the UK and Europe. For example, today there are mixed couples (black and white) who could later provide many carriers needing to hear about the disease, so they will have to avoid marrying another carrier, as they may have a child with the disease.

Our aims and Objectives

1- To inform, train and increase public awareness, as well as to educate people in Yorkshire.

2- To make immigrant communities (from Africa and the Caribbean) living in the UK aware of how to prevent having children with Sickle cell through information campaigns, leaflets and circulars.

3- To educate people in Africa about Sickle cell anemia.

4- To provide financial assistance to sufferers of Sickle cell in Africa.

POWERS

1- Collaborate with other associations, public and private health system infrastructures in the United Kingdom and Europe that are fighting against Sickle cell and endemic and non-endemic illnesses through the exchange of information, symposia and conferences.

2- Develop partnerships with other public and private organizations in the United Kingdom to reach and fulfill our objectives. To help other Sickle cell projects and associations in Africa and in other developing countries.

The forms of sickle cell anaemia

Sickle cell SC form
Sickle cell anaemia SS
Sickle Betathalassaemia

Sickle cell SC form:
This is a serious form of the disease so it is similar to the SS form.

Sickle cell anaemia SS form:

This form affects people who have the most serious form of the disease. ; in some developed countries in which the disease is known. Most often, this form takes hold after the age of six months. In most cases, it is at this age that the person affected begins to suffer from painful attacks of joint pain. This is a chronic illness which remains incurable at this present time. From the first symptoms of the illness, regular follow-ups are necessary to take care of the patient psychologically. Sickle Cell Anaemia or Disease is a genetic illness of the blood which is non-contagious and hereditary. It is the result of the abnormal haemoglobin called HBS. Usually people who are affected suffer from pain in the muscles and bones when they have an attack generally called “Sickle Cell crisis”.

Sickle Betathalassaemia:
This form is similar to the SS form, except that beta thalassaemia is a mix of the normal red-blood cells A and the abnormal S. Scientific progress in Western countries in which sickle cell anaemia is known enables us to show, in terms of percentage, the quality of normal and abnormal red-blood cells, of the suffers of beta thalassaemia. If it is proven that the level of normal red-blood cells in beta thalassaemia is even higher than the level of abnormal red-blood cells, this allows the suffer concerned to have fever attacks than the SS suffer.
This can also protect against severe anaemia (insufficient blood in the body), which is very common amongst sufferers of the SS form.

Brief history of sickle cell anaemia

A few centuries ago, sickle cell disease was also a disease of the western world. At this time, it was beginning to be eradicated through a screening programme of couples at risk or carriers of the S sickle cell gene, also called pure AS carriers. The S gene is equal to the trait of the disease; there fore any patient carrying this gene has abnormal haemoglobin. However, carriers of the A gene have normal haemoglobin. Sickle cell disease is not visible in the patient. In some western countries screening programmes are in place to test for the genetic and hereditary conditions during pregnancy.

Often in developing countries, people do not have as much information about sickle cell disease available to them as in the western world.

Does Sickle cell disease have a specific life expectancy?

Thanks to recent scientific advances, the sickle cell sufferer does not have a fixed life expectancy. However, it depends upon the environment in which the patient lives. According to the observations of sickle cell anaemia association made internationally, it is clear that a sickle cell sufferer, receiving adequate medical care, can live as long as a healthy individual.

The presence of specialist centres and expertise in this area enables sufferers to develop normally whether this is medically, educationally or socially. In most western countries, patients are given psychological care by non- governmental organisations together with scientists working in that area.
Developing countries have limited funds which prevent them from copying the example of western countries. For example, it is impossible to say for certain that a sufferer in Africa has the same life expectancy as a sufferer in the west. In developing countries the lack of adequate infrastructure produces a higher mortality rate. Malaria is one of the major causes of death for sickle cell sufferers.

The lack of specialist means that complications linked to sickle cell disease such as necrosis, osteites and persistent ulcers allowed to develop, which can lead the sufferer to become disabled. The fact that there is an insufficient number of specialist centres and equipment for this type of operations makes it more common. The lack of political will coming from the continent’s leaders only leaves voluntary actors and doctors facing those harsh realities. The ill and their families do not have psychological support and often lack deep meaning information about the illness. Some sufferers and their family blame Satanism for this ; they follow some sort of fetishism and rites in order to find a utopia recovery.

To see diary about meetings of Sickle click here

Our activities for 2009 to 2010:

1- Ordinary meetings every forty (40) days include free food. Travel expenses will be paid to sickle cell sufferers when funds available.

2- Once a year a conference will be organized for the public to provide more information about the disease. With activities available.

3- Each year like in the end of 2008, the ASYABI will organize an event around Sickle Cell. This event may become like an international conference on Sickle cell anaemia. This will be organized with the collaboration of others charities, organisations and the Federation of Sickle cell sufferers and Thalassaemia (FMDT) in France which comprises twenty charities. We will also request the collaboration of the OILD in France that means the “International Organization of Fighting against Sickle cell anaemia which has international experience to organize this kind of event. So if all goes well; representatives of charities of the disease in the world, experts Scientifics and sickle cell sufferers will come along to this event.

NB: If you are a sickle cell sufferer or parent from Leeds, please do not hesitate to join the local community group run by the Sickle cell Clinic of Leeds.

The ASYABI is a charity with international aims helping African charities of Sickle cell sufferers.

Management Committee:

Mr. Olivier Mmounda
Chairman

Mr. Georges Tankou
General Secretary

Ms. Tecla Chishugi
Treasurer

Mrs. Judith Lékélé
Adviser

Mr. Glenn Kavanagh

Adviser

To contact us:
E-mail : asyabi@asyabi.co.uk
Telephone : 00(44)7904921012

to help us, please you can donate online at: HSBC Bank
Account number 41338285 Sort code 40 27 10 Account name "ASYABI" If it is by cheque, please make it payable to: ASYABI

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Faites vos dons à : Banque HSBC numéro bancaire 41338285 Sort code 40 27 10

French version

QU’EST CE QUE LA DREPANOCYTOSE ?
La Drépanocytose ou anémie falciforme est une maladie génétique du sang, non contagieuse et héréditaire. Elle est due à une hémoglobine anormale HBS. Les personnes atteintes ressentent généralement des douleurs osseuses, articulaires et musculaires lorsqu’elles sont en situation de crise.

LES FORMES DE DREPANOCYTOSE

Il existe plusieurs formes de drépanocytose :
1-) La drépanocytose SC
2-) La Drépanocytose SS
3-) La Drépanocytose Sbétathalassémique

LA DREPANOCYTOSE SC

Cette forme est la transmission d’un gène associé à la transmission d’un gène C. Ces deux sortes d’hémoglobine donne un syndrome drépanocytaire majeure. La différence dans les symptômes existe mais globalement la Drépanocytose SC se traite de la même manière que la Drépanocytaire SS.

LA DREPANOCYTOSE SS

Cette forme concerne les personnes malades, encore appelées malades à 100% dans certains pays développés où la maladie est connue. Cette forme SS s’installe le plus souvent après l’âge de six mois. Dans la plupart des cas, c’est généralement à cette âge que le malade commence à faire les crises douloureuses et articulaires. Cette maladie est chronique, incurable pour le moment. Dès les premiers signes de la maladie, un suivi régulier s’impose tant pour les soins que pour la prise en charge psychologique du malade.

LA FORME SBETATHALASSEMIQUE

Cette forme est similaire à la forme SS. Sauf que la Bétathalassémique est un mélange des globules rouges normaux A et anormaux S. Les avancées scientifiques dans les pays occidentaux où la drépanocytose est connue permettent aujourd’hui de ressortir en terme de pourcentage la quantité des globules rouges normaux et anormaux du malade Sbétathalassémique. S’il s’avère que le taux des globules rouges normaux dans la Bétathalassémique est plus élevé que le taux des globules rouges anormaux ; ceci permet au malade concerné de faire moins de crises que le malade SS et cela peut aussi être une protection contre les anémies sévères (insuffisance de sang dans l’organisme). Ce fléau est très fréquent chez les malades SS. En occident, le stress favorise non seulement les crises mais aussi ces fléaux. En Afrique la malaria en est cause première de ces fléaux.

BREF HISTORIQUE DE LA DREPANOCYTOSE:

Selon l'historique scientifique ; il y’a quelques siècles, la drépanocytose a aussi été une maladie occidentale donc de race blanche. Il y’a également quelques siècles qu’elle a été éradiquée sur ce continent à travers un programme de dépistage des couples à risque ou porteur du gène S de la maladie, encore appelés porteurs sain AS ; le S qui est égal au trait de la maladie donc l’hémoglobine anormale et le A qui est égal à l’hémoglobine normale. La drépanocytose ne se lit pas sur le visage et dans certains pays concernés en Afrique par la maladie l’on a constaté que la plupart des porteurs du trait de la maladie sont des personnes très costaudes physiquement.

En occident, avant tout mariage ou tout projet de procréation humaine, le dépistage est systématique à travers des examens prénuptiaux qui permettent de dépister toutes les maladies génétiques ou héréditaires contagieuses ou non contagieuses.

Les pays sous développés et en voie de développement sont restés dans l’ignorance et la drépanocytose a ainsi posé sa fondation en Afrique, les Caraïbes ou les pays subsahariens, le continent Américain n’a pas lui aussi été épargné due au néocolonialisme et ses mutations à travers la présence des noirs américains aux USA, l’Amérique latine, l‘Asie etc… Le plus souvent l’amalgame est cause de cette ignorance ; le groupe sanguin A, B, O, AB et le facteur rhésus (+ -) sont pris comme étant des résultats positifs et sans drépanocytose. Un drépanocytaire peut avoir le même type de groupe sanguin y compris le même facteur rhésus qu’une personne sans drépanocytose.

La drépanocytose est première maladie génétique au monde mais, elle est classée parmi les maladies orphelines. Elle fait des ravages dans les continents sous développés concernés.

LA DREPANOCYTOSE A T-ELLE UNE EXPERIENCE DE VIE PRECISE ?

Avec les avancées scientifiques, la personne drépanocytaire n’a pas une durée de vie déterminée ; cependant tout dépend de l’environnement qui l’abrite. De part les observations faites sur le plan international par les associations des drépanocytaires vivant en occident en collaborations avec les scientifiques experts et professionnels dans le domaine, il est clair qu’un drépanocytaire vivant en occident a la même expérience de vie qu’une personne saine. Car la présence des centres spécialisés et des experts dans le domaine permettent à ce dernier de s’épanouir normalement tant sur le plan médical, qu’éducationnel et même sur le plan de l’insertion sociale. Dans la plupart de ces pays l’accompagnement psychologique est favorisé par la présence des associations des malades et des organisations non gouvernementales en collaboration avec les scientifiques du domaine (médecins et autres).

Par conséquent, les pays sous développés et en voie de développement touchés par la drépanocytose ont des moyens très limités pour asseoir ou copier l’exemple des pays industrialisés. De part les observations faites sur ces continents, en Afrique par exemple, il est impossible de dire avec certitude qu’un drépanocytaire peut avoir une expérience de vie normale ou comparable à une personne saine. Si l’on se réfère aux réalités et témoignages des malades vivant sur ce continent ; ils survivent avec leur maladie et non point une durée de vie déterminée. Le manque des infrastructures médicales adéquates ou spécialisées favorise un taux de décès élevé et la malaria, l’une des premières cause de décès du drépanocytaire en Afrique. Elle est destructrice des globules rouges qui sont déjà déformés ou anormaux à la naissance, ce qui favorise les anémies sévères, causent de décès réguliers des personnes atteintes (enfants comme adultes malades). Le manque de spécialistes favorise le développement des complications liées à la drépanocytose telles que : la nécrose, ostéites, ulcères continuels qui amènent beaucoup de patients drépanocytaires à un handicap à vie dû à l’absence des centres spécialisés et équipés pour ce type d’intervention chirurgicale. Le manque de soutien sur le plan international laisse seuls les dirigeants de ce continent et les acteurs associatifs face à ce combat. Les malades et les familles concernés n’ayant pas un accompagnement psychologique adéquat, manque souvent d’information profonde sur la maladie. Certains malades et leurs familles attribuent leur maladie au satanisme ; se livrent ainsi aux rites traditionnels, aux fétiches dans le but de recouvrer une guérison utopique.

ADYAIB OU ASYABI QUI SOMMES NOUS ?

L’Association des Drépanocytaires du Yorkshire pour l’Afrique et l’Information de Base (ADYAIB) est une association fondée par des malades drépanocytaires dotés d’une expérience dans ce domaine. Elle a été fondée en Juillet 2008 à Leeds. Elle est à but non lucrative.

BUTS ET OBJECTIFS

Informer, former, sensibiliser et éduquer les populations du Yorkshire et ses environs sur les questions liées à la drépanocytose et aider autant que possible les associations de drépanocytose d’Afrique.

Pour atteindre ces objectifs, l’Association travaille main dans la main avec des bénévoles et volontaires ; elle associe aussi : les structures hospitalières, les associations, les Eglises, les groupes estudiantins etc. des villes où elle mène ses actions.

PARTENAIRE ASSOCIATIF INTERNATIONAL POUR DES ECHANGES D'INFORMATION

SOS GLOBI 94 à Paris / Henri Mondor. Membre fondatrice de la Fédération des Malades Drépanocytaires et Thalassemiques en France (F.M.D.T)

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