Sickle cell research: Why the focus on employment? Professor Simon - - PowerPoint PPT Presentation

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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

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Presented to OSCAR Liverpool Sickle Cell and Thalassaemia Support Group (LSTG), 30th November 2018

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Sickle cell research: Why the focus on employment?

Professor Simon Dyson and

Dr. Maria Berghs

1 Sunday, 16 December 18

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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

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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

f 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

n care but life-course approach increasingly needed

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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

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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)

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November 2013

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Policy Guide

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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

November 2013

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National Haemoglobinopathy Register 2016-2017

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National Haemoglobinopathy Register 2016-2017

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NHR 2015-2016

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Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle Cell Disorder Project

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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

November 2013

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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)

November 2013

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November 2013

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A Career in Law

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http://www.lawsociety.org.uk/law-careers/becoming-a- solicitor/equality-and-diversity/social-mobility- ambassadors/ambassadors-2017/whitney-joseph/

“Our ambitions are barely recognised”

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Thank you!

sdyson@dmu.ac.uk Thank-you to the wonderful people we work with.

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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

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Pattern of Inheritance

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Pattern of Inheritance

A A

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Pattern of Inheritance

A S

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Pattern of Inheritance

S A

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Pattern of Inheritance

S S

SICKLE CELL ANAEMIA (Hb SS)

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Pattern of Inheritance

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The discovery of resistance to malaria of sickle-cell heterozygotes

CC 0 Anthony Allison 2009

Universal Public Domain Dedication 24 Sunday, 16 December 18

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The discovery of resistance to malaria of sickle-cell heterozygotes

CC 0 Anthony Allison 2009

Universal Public Domain Dedication 25 Sunday, 16 December 18