2014 Report ASYABI Event

Report  2014 Leeds ASYABI Public Conference 2014 on Sickle Cell Disease or Anaemia

 

As planned, the seventh ASYABI annual public conference for Sickle Cell took place in Leeds on Saturday 30th August 2014. This event has welcomed varieties of delegations from Leeds and Yorkshire including.

 

This conference has allowed the public to get an overview presentation on ‘Living with Sickle Cell and ASYABI charitable work’. Based on the overview presentation given by the Chair & Project Manager of ASYABI who is a sufferer himself on ASYABI research so far in the ground for the past six and half years in which ASYABI has found out, through our own research, that only in Leeds where ASYABI is based, there are 95 patients (adults) with Sickle Cell Anaemia or disorder (SCD) in Leeds and more than 85 of them live in disadvantaged areas.

 

According to ASYABI research on the ground, these patients suffer from social exclusion, isolation, even when they are hospitalized at St. James Hospital for sickle cell crisis (pain in the bones). They are totally isolated without any social support because of the lack of a self-help patient group like ASYABI which takes into account all these aspects. As patients we can understand their feelings and needs. This painful and chronic genetic condition that thousands of children and adults affected by sickle cell like us suffer held them to feel different from other children; as a result of this social exclusion, across the UK despite the fact there are more 14,000 of sufferers but less than 300 patients with this condition take part directly to social events, conferences and seminars on their own condition!

 

In Leeds, especially sufferers from those disadvantaged areas are the highest affected by this huge stigma, only 3 out of 40 patients came to public events because they do not want to be identified as sufferers of this painful and common genetic disorder; they feel shameful of their condition based on the way in which their communities described this disorder as a very painful and contagious illness that affected children and adults may die at their early stage of their live without for most of them become adults.

 

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, this data is below the standard figures provided previously by the largest voluntary group in the field known as the Sickle Cell society who suggests that there 14,000 to 15,000 of sufferers with this condition in the UK but 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.

 

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. See more at: http://www.sicklecellsociety.orgWorldwide statistics, according to 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).

     

    Based on the facts provided above by ASYABI team to the audience; feedback received from the audience has strongly advised and recommended ASYABI team to multiply their actions through different kind of events especially to plan and host in the coming month seminars in order to reach patients and families who are affected by this condition in Leeds and across the Yorkshire for experience exchanges among patients to increase their self-believe, self-help and optimism to fight against the stigma that they face for a change of perception.

     

    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 Leeds City Council for their continuing support to our marginal cause. Thank you.

     

Report made by, ASYABI on 1st November 2014