Sickle cell research: Why the focus on employment? Professor Simon Dyson and Dr. Maria Berghs 1 Presented to OSCAR Liverpool Sickle Cell and Thalassaemia Support Group (LSTG), 30 th November 2018 Sunday, 16 December 18 1
Sickle Cell Disease/Disorders � Sickle Cell Anaemia (HbSS)…………………………70% � Haemoglobin SC Disease (HbSC)…………………..25% � Sickle beta-plus thalassaemia (HbS-beta + thal) [3 main types] � Sickle beta-zero thalassaemia (HbS-beta - thal) � Haemoglobin SD -Punjab Disease (HbSD -Punjab ) � Haemoglobin O -Arab Disease (HbS O -Arab ) � Haemoglobin SE Disease � Rarer types � But not sickle cell trait (HbAS) which is a genetic carrier state (only becomes relevant in context of dangerous sports-training practices) 2 Sunday, 16 December 18 2
Sickle Cell Disease/Disorders � Inherited, multi-system, (in)visible, chronic illness � Acute illness, chronic illness, disability, co-morbidity � Affects all but more common in those of African, Caribbean, Indian, Middle Eastern and Mediterranean descent � 1 in 10 of African-Caribbean descent are genetic carriers, 1 in 4 of West/Central African descent � Painful crises main cause hospital admissions [Stereotyping of drug-use and pain thresholds] � Living longer so our questions are changing…always a focus on care but life-course approach increasingly needed 3 Sunday, 16 December 18 3
Sickle Cell Figures � 300,000-400,000 born globally (Nigeria, DR Congo, India) � 15,000 people with SCD in England � 1 in 2000 all births in England is a child with SCD =c 300 a year (1 in 600 in London) � 1 in 70 of all births is a genetic carrier (sickle or thalassaemia) = c 9,500 a year � 1 in 450 White British births a carrier for a gene relevant to sickle cell (Hb C, D, E as well as HbS) � Changing picture….increasing diversity and global issue Sunday, 16 December 18 4
Social Issues in Sickle Cell � Ethnicity and Screening for Sickle Cell & Thalassaemia � Sickle Cell and Deaths in Custody � Fathers and Ante-natal Screening for Sickle Cell � Sickle Cell and Thalassaemia Trait: Implications for Identity and Family � Gender and Sickle Cell in Sierra Leone � Sickle Cell in Schools � Sickle Cell, Work and Employment � Sickle Cell and Higher Education (UK/Nigeria) � Sickle Cell and Cure (UK/US) 5 Sunday, 16 December 18 5
6 November 2013 Sunday, 16 December 18 6
Policy Guide Sunday, 16 December 18 7
Open Educational Resources � http://sicklecellanaemia.org/ � Used in Brazil, Nigeria and being translated into other languages � In Sierra Leone we worked with schools to develop a Krio version � We also developed a school song that is played on the radio 8 November 2013 Sunday, 16 December 18 8
National Haemoglobinopathy Register 2016-2017 9 Sunday, 16 December 18 9
National Haemoglobinopathy Register 2016-2017 9 Sunday, 16 December 18 9
NHR 2015-2016 10 Sunday, 16 December 18 10
Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder Project 11 Sunday, 16 December 18 11
Barriers and Enablers to Employment � Advisory group � Two focus groups where the questions on employment were checked � 44 people with sickle cell interviewed � Aim is to create two guides: Employers and employees � Policy workshops for these guides in Sandwell and London 12 November 2013 Sunday, 16 December 18 12
Diversity in experiences � School (early) = work � Employers causing illness and people working through pain � Reasonable adjustments + / - � Discrimination (racism, sexism, disablism, serious illness, maternity) � Self employment and working contributions � Too ill to work (PIP, universal credit,tribunals) 13 November 2013 Sunday, 16 December 18 13
14 November 2013 Sunday, 16 December 18 14
A Career in Law “Our ambitions are barely recognised” http://www.lawsociety.org.uk/law-careers/becoming-a- solicitor/equality-and-diversity/social-mobility- ambassadors/ambassadors-2017/whitney-joseph/ 15 Sunday, 16 December 18 15
Thank you! sdyson@dmu.ac.uk Thank-you to the wonderful people we work with. 16 Sunday, 16 December 18 16
Resources http://www.tascunit.com http://www.sicklecelleducation.com http://www.sicklecellanaemia.org https://drill.our.dmu.ac.uk https://soundcloud.com/search?q=sikul%20sel END of PRESENTATION 17 Sunday, 16 December 18 17
Pattern of Inheritance 18 Sunday, 16 December 18 18
Pattern of Inheritance A A 19 Sunday, 16 December 18 19
Pattern of Inheritance A S 20 Sunday, 16 December 18 20
Pattern of Inheritance S A 21 Sunday, 16 December 18 21
Pattern of Inheritance S S SICKLE CELL 22 ANAEMIA (Hb SS ) Sunday, 16 December 18 22
Pattern of Inheritance 23 Sunday, 16 December 18 23
The discovery of resistance to malaria of sickle - cell heterozygotes CC 0 Anthony Allison 2009 Universal Public Domain Dedication Sunday, 16 December 18 24
The discovery of resistance to malaria of sickle - cell heterozygotes CC 0 Anthony Allison 2009 Universal Public Domain Dedication Sunday, 16 December 18 25
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