Full first recorded video talk about ASYABI charitable work in the UK for the promotion and awareness of Sickle Cell Disease (SCD) by its Founder at the official induction and inauguration of the new ASYABI’s London branch on Sunday 13th March 2016. To be watched in full for a deep understanding.
Our kids can make a huge difference for the promotion of an unknown condition like Sickle Cell!
As planned the parliamentary reception organised by the Specialised Healthcare Alliance (SHCA) took place in the House of Common on 17th June 2014 under the patronage of the honourable Andrew Gwynne, MP & Shadow Health Minister who took this opportunity during his brief speech to highlight the importance of promoting rare genetics disorder in which Sickle Cell and Thalassaemia are included. On this photo above, on the end left, Mr Andrew Gwynne, MP & Shadow Health Minister and Mr Olivier Mmounda, ASYABI Chair & Project Manager. See more photos on the Blog menu above.
ASYABI is currently recruiting a volunteer who can work with us, a webmaster who can link ASYABI site to Facebook, twitter, etc. If interested please get in touch with us at: email@example.com
The Association of Sickle Cell sufferers of Yorkshire and Africa and Basic Information also known as ‘ASYABI’ was founded in Leeds in the United Kingdom in June 2008 by a patient with Sickle Beta-thalassemia which is similar to Sickle Cell Disease or Anaemia (SCD). It is a registered charity led by volunteers and people affected by Sickle Cell Anaemia aiming to provide self-support and information, advice and other helps needed to people and their families affected by sickle cell. Support and advice are provided by telephone, email and through home visits. ASYABI works with the support from Health Care professionals to ensure that individuals with sickle cell get the optimum service from health, education or social care. Since 2009, our self-help patient group well known as ‘ASYABI’ has been able to provide conferences, leaflets, etc. on this issue to raise awareness of sickle cell disorder in Leeds and Yorkshire. ASYABI is aiming to increase the awareness on sickle cell as well as to help patients and families to fight against the huge stigma associated to this marginal painful and common genetic condition for a change of perception. Most patients come from minority and ethnical groups across the UK and Yorkshire.
This 4 minute video is about living with Sickle Cell, which thousands of children & adults face every day in the UK! Watch it to understand more how hard it is to live with this condition.
What is Sickle Cell Anaemia or Disorder?
Sickle Cell Disease or Anaemia is an inherited blood disorder. It is not contagious. It is the result of the abnormal haemoglobin (HB) called HBS. Usually children and adults who are affected by sickle cell suffer from pain in the muscles and bones when they are in crises generally called (Sickle Cell crisis). However, there are different forms of Sickle Cell and Thalassaemia. Some individuals can be Sickle Beta-thalassaemia which means that they have the gene or the haemoglobin S associated to the beta-thalassaemia which is a mix of the abnormal red blood cells or haemoglobin S and the normal red blood cells A. But they have sickle cell crisis as those with sickle cell anaemia or disorder. It depends on the rate of the normal red blood cells that are in their beta-thalassaemia which can somewhere protect them against regular anemic and blood transfusions. Both parents have to carry a genetic trait (sickle cell trait) before it can be passed on to their child. if they do, there is a 1 in 4 chance in every pregnancy that their child will be born with the disorder (sickle cell). Carriers can be identified by a simple blood test.
Facts in the UK:
- There are more than 15,000 of Sickle Cell sufferers in the UK.
- 240, 000 people are carriers of the Sickle Cell gene.
- More than 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.
ASYABI has found out, through our own research, the following number of patients in Yorkshire and surrounding areas:
- St James’s University Hospital, Leeds has 95 patients (adults),
- Bradford, 20 patients,
- Manchester Royal Infirmary, 267 patients (adults),
- Manchester Childrens Hospital, 213 patients (children),
- Nottingham University Hospitals, 85 patients,
- Homerton Hospital, 80 patients,
- Sheffield Teaching Hospitals, 75 patients (adults),
- Sheffield Childrens Hospital, 63 patients (children)
According to NHS sources (http://www.nhr.nhs.uk/pdfLinks.aspx), there are more than 200 patients in the Yorkshire area which may suffer from Sickle Cell and associated illnesses which this project will target for support. In link to the current ongoing statistics provided by the National Haemoglobinopathy Registry (NHR), more than 200 patients from the Yorkshire area will directly benefit from this project. Please note that 95 patients (adults) from this figure are based in Leeds. According to the ongoing data of the NHR, the current estimation of patients with sickle cell in the UK is 5,457. However, in connection to the higher stigma associated to this common and painful genetic condition, a very fewer of patients are giving their consent to be registered in the government data base. All charities in the field are now taking this issue as a matter of emergency.
ASYABI Main Proposal / Project in the UK:
‘Raising Awareness and Reaching Marginal Community with Sickle Cell Disease (SCD) for a Change of Perception’
Only in Leeds there are 95 adults with SCD but less than 3 out of 40 are keen to come along to sickle cell events (conferences, seminars, etc.) because they do not want to be identified as patients. This program is for the change of perception by giving public talks (presentations) on the illness at schools, churches, community events, etc. ASYABI also uses this opportunity to show a video shut of 4 minutes film on ‘Living with Sickle Cell Disease in the UK’. Please feel free to invite ASYABI to your events for the awareness.
ASYABI’s UK Cases study:
- A 62 years old patient with Sickle Cell Disease by the end of 2015 his Personal Independence Payment was stopped. He was referred to ASYABI with a quotation to its Chair & Project Manager by a Researcher from Sheffield University who in the past years had worked with ASYABI via its Chair & Project Manager who took part to her research as a member of the Advisory Group on ‘Living Warm with Sickle Cell Disease’. He had emphasised the group during this research on the high stigma associated to Sickle Cell Disease (SCD); based both on his own experience as a sufferer and his position for more than sixteen (16) years as a patient leader for Sickle Cell Charities worldwide. So the researcher who was the main responsible of this research had referred this vulnerable 62 years old man to ASYABI based on its leader competence and knowledge in the field that she had experienced and listened to pending this partnership. ASYABI did a letter asking for reconsideration to the authority involved with this matter. A month later ASYABI received a call from this 62 years old to thank you so much as ASYABI input led to his support to be reinstated with no need to go to the Court.
- Mr Ferdinand X, a 23 year old suffering from sickle cell came to study in the UK; a few months later he was put on anti-depression due to the stigma that he had about his condition because for him he had never put weight due to the condition in Africa and was expecting a magical cure in the UK to grow his bones and put weight so he was disappointed when he was told by his doctor consultant and GP that there is not any such cure. He felt depressed and was put on anti-depression drugs until eight (8) weeks later he met two volunteers of ASYABI Trustees. The Chair & Project Manager of ASYABI had used his own experience as a sufferer and had been counselling and advocate him based on the ground that everything was set to his mind. In the second week, Mr Ferdinand called him to say ‘God bless you…you were right because I had stopped taking the drugs and I am less anxious now’. Since then he returned to school. He was calling the Chair of ASYABI during the days and nights for counselling support.
- Mr Chiamaka, a sickle cell patient; a 24 year old with sickle cell within the Asylum felt depressed and started to smoke and being aggressive in London where he was allocated a place. He was counselled and assisted by ASYABI. The counselling led him to stop smoking and helped him to have fewer crises at part from minor crises linked to other expects such as cold temperature or constant stress.
- Families K and S in Manchester and in Glasgow both have children with sickle cell; one of the partners within those couples (males) feel that on day to day basis; when their child has a crisis; he is the one who take most of the stress both of his child and her partner and called regularly one of ASYABI Trustee because his experience both as an activist and a patient through regular phone conversations on living with the condition outside the hospitals helps them to get more straight to support their wife’s and children with this condition. They regularly end the conversations by a ‘Big Thank you and God bless and strength your spirit for continuing to support us because it does not have a price what you are doing through ASYABI’.
ASYABI: 25 Woodview Mount, Leeds, West Yorkshire, LS11 6LG Telephone: 00(44) 113 2711307 / 07450173201 Email: firstname.lastname@example.org
ASYABI Trustees / Directors:
Mr Olivier Mmounda A Nyam
Chair & Project Manager
Ms Emilia Mbunue Mubah
Miss Rose Weladji Tchoumessi
Board & Advisers in the Advisory Capacity:
Mr. Jan Doerfel
Dr. Hani Zubeidi
Dr Asa’ah Nkohkwo
ASYABI Technical Adviser