This video of November 2010 has been made in Leeds to strengthen our campaigns on our condition

Did you know? Sickle shaped cells were first reported in 1910 by Dr. James Herrick in Chicago. He found them when he was examining the blood of a West Indian student who complained of tiredness and pains in the body. Looking through a microscope Dr. Herrick found that some of the red blood cells had an unusual sickle shape instead of the normal round one.

What is Sickle Cell Anaemia or Disorder? Sickle Cell anaemia is a genetic illness of the blood which is none contagious and hereditary. It is the result of the abnormal haemoglobin called haemoglobin S. Usually people who are affected suffer from pain in the muscles and bones when they have an attack generally calls (Sickle Cell crisis).

Facts in the UK:

• There are more than 14,000 of Sickle Cell sufferers 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.

Why thousands of children were born with this condition?

Some individuals or parents of children who were born with this disorder have the Sickle cell trait and they are therefore known as carriers of the gene S or sickle, which is the abnormal haemoglobin or red cells, which can be passed to their children if both partner are carriers. They do not develop any symptoms of the condition such as their children with sickle cell; so it is important for anyone to have a blood test to see if you have sickle cell trait to avoid having a child with the condition. Some people sometimes think that the size of an individual determines whether he/she has a sickle cell gene or trait, this is false; anyone especially black African and Afro-Caribbeans can be a carrier of the sickle cell trait. Only the blood test will determine whether he/she has it or not. Most people who have sickle cell trait are healthy. If you and your partner both have the sickle cell trait, there is a 25% chance that any child conceived may have sickle cell anaemia or disorder and 50% chance they will have the trait.

What about the worldwide aspects of this illness?

• Dr Williams from Oxford university, 80% of cases are in Africa with 200,000 new born every year. Dr Jemima Dennis-Antwi, Regional Advisor (Anglophone Africa), International Confederation of Midwives, if nothing is done by 2020, the number of new born with this condition in Africa will be increasing by 400,000 every year.
• This condition affects many countries across the world (1 in 4 West-Africa and 1 in 10 Afro-Caribbeans, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in Caucasians).
• Due to the lack of specialised centres in developing countries hundreds of children affected by this condition are dying every day in Africa and thousands every year.

What have been done by the authorities in the UK to fight against Sickle Cell Anaemia or Disorder?

The fight against this condition in the UK as in any Western countries has been improved for decades now, through National Screenings in the most hospitals units for blood tests and followed by a huge advocacy from scientists and sufferers. In October 2008, the All-Party parliamentary Group for Sickle Cell and Thalassaemia (APPG) had been set up to raise awareness of the conditions in Parliament. This institution is mainly comprised of MPs from all political parties. The Shadow Minister for Public Health, Ms. Diana Abbott, MP, is the Chair. As to strengthen campaigns and to encourage campaigners and researchers of the field, every year, this institution offers an All-Party Parliamentary Group Reception in the House of Common in which scientists on the field and sufferers leaders of patient groups are invited to discuss issues in which the condition is involved and the NHS changes.

Is there any stigma linked to Sickle Cell?

In the UK, as in many other countries across the world, children with this condition face a huge stigma. Many of them have sometimes to explain repeatedly their symptoms at schools, hospitals and even to their extended families. This lack of basic knowledge on the condition had set up one kind of general stigmatisation that parents were then so shameful to explain the condition of their children to their communities. Affected children were then growing up with that stigma and as a result of this, even in the UK today, less than one thousands of sickle cell sufferers are directly involved to sickle cell campaigns despite the fact that, there are more than 14,000 of patients in the UK.

Does Sickle cell disease have a specific life expectancy?

Thanks to recent scientific advances, a 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 made in the Western countries by voluntary groups on this condition and associations, it is clear told 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 sickle cell sufferer in Africa has the same life expectancy as a sufferer in the west. In developing countries the lack of adequate infrastructures produces a higher mortality rate. Malaria is one of the major causes of death for sickle cell sufferers.

The lack of specialists means that complications linked to sickle cell anaemia 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 equipments for this type of operations makes it more common. The lack of political involvement from the continent’s leaders only leaves voluntary groups and doctors facing those harsh realities. Patients 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.

Who are we? The Association of Sickle Cell sufferers of Yorkshire for Africa & Basic Information (ASYABI)

This association has been set up in Leeds in June 2008 by a sickle cell sufferer who is an experienced campaigner on the field. It is a patient group based in Leeds to raise people awareness of Sickle Cell Anaemia or Disorder in Leeds and Yorkshire.

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.

What to do next?

To join us or for any further information, please contact us at the address below. Any sufferer, parent and individual can join us.

ASYABI C/O Retas
The Roundhay Road Resource Centre
233-237 Roundhay Road – Harehills - Leeds
Tel.: 07904921012

Appointments for a meeting with one of members of the team can be made for every Friday afternoon at this address above. Thanks.

To support our work, 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.

Recently on 1st March 2012, in connection to the hard work that our patient group based in Leeds, we have been selected within a new project titled 'LocalGiving', held by the Leeds Community Foundation for empowering donations for the valuable work that charities and voluntary groups like us do within their communities. To donate us online and through this link, please click this link: https://localgiving.com/charity/asyabisicklecellyorkshireuk Thank you.

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Report of the ASYABI Conference 2011 on Sickle Cell in Leeds

As planned, the fourth ASYABI annual public conference for Sickle Cell took place in Leeds on Saturday 20th August 2011. This event has welcomed varieties of delegations from London and Birmingham including an increase audience from Leeds and across the Yorkshire.

The event was presented by Denis Hodge, a professional presenter from UK country Radio.com, which is based in the Yorkshire and varieties of cultural things took place such as, a live performance of Harmony Choir, a mix group of singers in Leeds, Kathryn performance, who so far had been performed at XFactor, pre-selection including the hip hop performance of the ASYABI Chairman, Olivier Mmounda.

The ASYABI would like to acknowledge the continuing support of other sickle cell organisations across the UK such as Oscar Birmingham through his Chairman, Ajay Dattani, who was one of the speakers of the conference. He did a testimony on his with sickle cell. Dr. Asa’ah Nkohkwo, Nationwide Adviser and formerly CEO of the Sickle Cell Society in London, did a presentation on the New updates of Department of Health linked to Sickle Cell. On his presentation, which should be taken 20 to 30 minutes, but went nearly to an hour because of the complex new updates in which the data base provided by the government shown that less than 5,000 patients with sickle cell are registered in the govt data base. These statistics have a huge negative impacts in term of the allocations of funds for the improvement of care and social care of those who are affected by this condition in the UK. These numbers in which the government relies on to make decisions may have long run impacts on patients because the current number of patients and according to NGOs, in the UK there are 12,500 to 14,000 of patients with sickle cell.

The former CEO of the Sickle Cell Society known as the UK’s largest voluntary group on this issue, which entered a few years ago into a formal partnership with the Department of Health to provide varieties of direct services connected to the social aspects needs of those affected by this condition in the UK and especially in London where they are based. He was also too keen to express the view that the ASYABI growing campaigns of evangelising and raising awareness of Sickle Cell has a clear need of an office to bring patients together as well as to encourage them to get registered to tackle progressively the current data base in which the government relies on.

He has also advised the ASYABI team to multiply their actions through different kind of events in order to reach patients and families who are affected by this condition in Leeds and across the Yorkshire; as well as to encourage them to understand that they have themselves a huge responsibility to play and it is important for all patients to give their consent for the government to access their data base for sickle cell to get the full attention that it needs in term of the improvement of services for care as well as to increase the support of voluntary groups of patients across the country for the social aspects of the condition in which the huge stigma linked to it lead many patients to be hospitalised repeatedly and only a strong based of patients groups and voluntary groups can be best to play this role of what he called “the challenges after the hospital”.

The ASYABI event has also welcomed different delegates such as representatives au CEDCOW in London, which provides various of services to those affected by sickle cell there, for: accommodations, benefits etc. including the Chair of Women Restoration, Tecla Chishugi, who has given a talk on her work, which provides counselling and advice to those who are survivors of wars from developing countries who are living in the UK.

Without all of you, we could not make it, so we thank you all of you for your huge support and contribution for the success of this event and we would like to acknowledge local funders such as the Leeds Community Foundation and the Well-Being Funds for their continuing support to our marginal cause.

NB: A video on the event will be available on YouTube in the beginning of September 2011.

Report made by,

The ASYABI Team

Please can you help us to get these medical equipments below...? Thank you in anticipation for your help!

Dear all,

We are looking for about 20 pc computers (not big screens please) for a Sickle Cell project in a developing country and these four medical equipments below for a small centre there.

• Electric and solar binocular microscope with accessories
• Microscope triloculaire with accessories
• Complete device of electrophoresis with densitomete
• Portable device of echography delivered with probe

Could you please forward this to your network within the NHS and units of care as some hospitals may perhaps need to recycle or to change their equipments and give them to charities.

We can be contacted at any time for the collection. If possible, please give us one to two weeks prior to collection.

These equipments will be very helpful for hundreds of poor patients.

Thank you in anticipation.

Tel.: 07904921012
Email.: sicklecellyorkshireasyabi@yahoo.fr

To share Mr. Olivier Mmounda's experience on living with Sickle Cell...visit this link below

www.asyabi.wordpress.com

Mr. Olivier Mmounda is the main founder of the ASYABI. He suffer from the condition himself.

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

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

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 including scientists on the field such as Dr. Asa’ah Nkhokwo, Nationwide Adviser on Comprehensive Care and formerly Chief Executive of the Sickle Cell Society in London. He did a presentation on the new updates of Department of Health-Sponsored Project on Comprehensive Care, in which an early indication suggest that “there is an urgent need to strengthen the infrastructure of patient groups around the country”.

This event was mainly focused on the frontline (patients) testimonies such as , Mr. Ajay Dattani, Actor living with Sickle Cell in the UK and Chairman of the Organisation for Sickle Cell Anaemia Relief and Thalassaemia Support (OSCAR Birmingham); his testimony on his life has highlighted some challenges that he faced at his teenager age until he found the confidence to join the theatre group later on 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 change of perception; what he called “don’t live to die but live to live and he added…all my life until the age of 12, I was living to die! But I have realised that it was not true what people wanted me to believe that I was living to die”.

Mr. Kevin Dunkley, a sickle cell sufferer and Chairman of the Patient Network Support Group (PNSG) summarised his work of bringing together sufferers of the same condition for a common strength and self believe for a strong and solid communities that he believes will bring a lot of changes into the sickle cell campaigns. He had also made a sensitive testimony regarding five members of their community that they lost in the beginning of this year, including one of the co-founder of their organisation who started to address their campaigns. All of them were suffering of sickle cell but no evidence was provided that they died because of the condition.

Finally, Mr. Olivier Mmounda, ASYABI Chairman, on behalf of the group had first, thank you our guests speakers for their commitment of supporting our common cause through their long trip from Birmingham, West Bromwich and London to Leeds to support the ASYABI’s event, in which we believe 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 other sufferers. He concluded that such support and testimonies from other experienced sufferers like Mr. Ajay and Mr. Kevin should be used as an instrument to support that fact that, “there are some sufferers who can provide a strong advocacy into communities and bringing together sufferers of the same condition, which until today is not supported enough by the large number of sufferers who suffer from a huge stigma and do not want to present themselves as sufferers”. On his presentation on ‘Living with Sickle Cell in Africa’, he has addressed a concern 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 picture of sickle cell, in order to draw the international community attention on the higher figure of our condition in the worldwide, which affects about 200,000 new born every year in Africa where 80% of cases are living and dying without assistant and if nothing is done by 2020, this number will double 400,000 every year”. This event was also supported by OSCAR Sandwell in West Bromwich through their Centre Manager Ms. Rachel McFee, who took part to this ASYABI annual conference.

Mr. Georges Tankou, ASYABI General Secretary, in his word of welcome, has thanked the great attention, which is given to sickle cell by many scientists and personalities involved 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 great support to the cause, which contribute a lot to strengthen the Network of fighting against our condition across the UK through the meeting that they are holding every year in the House of Common known as “All-Party Parliamentary Group For Sickle Cell and Thalassaemia (APPG)Reception in the House of Common, in which important issues linked to our condition are discussed and this year, for the first time in three years of campaigns, the ASYABI has been invited to the 16 November 2010 meeting that the Chair of this institution, Ms. Diana Abbott, MP has held to discuss the changes that are taking place in the NHS and how these will affect patients with sickle cell and thalassaemia.

It was also agreed between the ASYABI team that such campaigns of raising awareness of our condition into Leeds & Yorkshire have to be held in the regular basis; at least once a year and material evidence such as pictures, videos have to be gather in order to inspire other sufferers to join our campaigns. If possible, other materials for publicity have to be hunted such as T-shirts with the logo of the group for the long run large campaigns in Leeds and Yorkshire.

Report made by the ASYABI Team

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 photos of our previous actions made in developing countries

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

Your donations will support greatly our work in the UK and worldwide. Hundreds of children and adults affected by our condition across the world are dying every day. Thank you

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 Or donate online at: https://localgiving.com/charity/asyabisicklecellyorkshireuk

ASYABI Management Committee:

Mr. Olivier Mmounda
Chairman

Mrs. Emilienne Blanche Amie Manga

Secretary

Mr. Ulrich Guenole
Treasurer

Dr. Asa'ah Nkhokwo

Adviser

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 décennies, la drépanocytose a aussi été une maladie occidentale donc de race blanche. Il y’a également quelques décennies 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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