Sickle cell disease (SCD) is a significant public health concern in sub-Saharan Africa, where it is the most prevalent genetic disorder, presenting numerous health care and sociocultural challenges. A case study of a young girl from Ghana's Ashanti region illustrates the stigma surrounding SCD, driven by traditional beliefs and misconceptions that perceive SCD as a spiritual affliction. This stigma results in social ostracism and discrimination, impacting affected individuals and their families. Despite the severe and unpredictable pain associated with SCD, effective management is often hampered by limited health care resources and infrastructure. In Ghana and other African countries, inadequate pain relief and a lack of specialized care worsen the suffering of people with SCD. Health care providers' responses vary from empathy to dismissal, reflecting broader systemic issues in care delivery. Stigma has extensive effects, including social exclusion, psychological distress, and educational setbacks. The case study underscores the vital role of community education and support networks, such as those provided by the Sickle Cell Foundation of Ghana and Sickle Cell Association of Ghana, in reducing humiliation and enhancing the lives of those affected by SCD. Addressing the complex challenges of SCD in Africa requires comprehensive strategies. Improving the health care infrastructure, promoting community education, and establishing robust support systems are crucial to alleviating the burden of SCD, with the involvement of both government and nongovernmental organizations. These measures help create a more inclusive and understanding environment for individuals living with this chronic condition, enhancing their quality of life and overall well-being.

1.
United Nations General Assembly
.
Recognition of sickle-cell anaemia as a public health problem
. Accessed
30
June
2024
. www.worldlii.org/int/other/UNGARsn/2008/277.pdf.
2.
World Health Organization
.
Sickle-cell anaemia report by the secretariat
. Accessed
30
June
2024
. http://apps.who.int/gb/ebwha/pdf_files/WHA59/A59_9-en.pdf.
3.
Piel
FB
,
Patil
AP
,
Howes
RE
, et al.
Global epidemiology of sickle haemoglobin in neonates: a contemporary geostatistical model-based map and population estimates
.
Lancet
.
2013
;
381
(
9861
):
142
-
151
.
4.
Konotey-Ahulu
FID
.
The Sickle Cell Disease Patient
.
Macmillan
;
1991
.
5.
Goffman
E.
Stigma: Notes on the Management of Spoiled Identity
.
Prentice Hall
;
1963
.
6.
Anie
KA
,
Egunjobi
FE
,
Akinyanju
OO
.
Psychosocial impact of sickle cell disorder: perspectives from a Nigerian setting
.
Global Health
.
2010
;
6
:
2
.
7.
Dennis-Antwi
JA
,
Culley
L
,
Hiles
DR
,
Dyson
SM
. “
I can die today, I can die tomorrow”: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition
.
Ethn Health
.
2011
;
16
(
4-5
):
465
-
481
.
8.
Ola
B
,
Coker
R
,
Ani
C.
Stigmatising attitudes towards peers with sickle cell disease among secondary school students in Nigeria
.
Int J Child Youth Fam Stud
.
2013
;
4
(
4
):
391
-
402
.
9.
Marsh
VM
,
Kamuya
DM
,
Molyneux
SS
. “
All her children are born that way”: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya
.
Ethn Health
.
2011
;
16
(
4-5
):
343
-
359
.
10.
Diallo
DA
,
Baby
M
,
Boiré
A
,
Diallo
YL
.
Management of pain of acute sickle cell pain crises by health care providers in Mali
.
Med Trop (Mars)
.
2008
;
68
(
5
):
502
-
506
.
11.
Oshikoya
KA
,
Edun
B
,
Oreagba
IA
.
Acute pain management in children with sickle cell anaemia during emergency admission to a teaching hospital in Lagos, Nigeria
.
S Afr J Child Health
.
2015
;
9
(
4
):
119
-
123
.
12.
Anie
KA
,
Olayemi
E
,
Paintsil
V
, et al
;
SickleGenAfrica
Network
.
Sickle cell disease genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
.
BMJ Open
.
2021
;
11
(
7
):
e048208
.
13.
Adigwe
OP
,
Onoja
SO
,
Onavbavba
G.
A critical review of sickle cell disease burden and challenges in sub-Saharan Africa
.
J Blood Med
.
2023
;
14
:
367
-
376
.
14.
Munung
NS
,
Treadwell
M
,
Kamga
KK
, et al.
Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries
.
Qual Life Res
.
2024
;
33
(
2
):
423
-
432
.
15.
Inusa
BPD
,
Anie
KA
,
Lamont
A
, et al.
Utilising the “Getting to Outcomes®” framework in community engagement for development and implementation of sickle cell disease newborn screening in Kaduna State, Nigeria
.
Int J Neonatal Screen
.
2018
;
4
(
4
):
33
.
16.
Lelo
PVM
,
Kitetele
FN
,
Akele
CE
,
Sam
DL
,
Boivin
MJ
,
Kashala-Abotnes
E.
Caregivers' perspective on the psychological burden of living with children affected by sickle cell disease in Kinshasa, the Democratic Republic of Congo
.
Children (Basel)
.
2023
;
10
(
2
):
261
.
17.
Okoibhole
LO
,
Ebenso
B.
A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana
.
Int Health
.
2023
;
15
(
6
):
684
-
691
.
18.
Adewoyin
AS
.
Management of sickle cell disease: a review for physician education in Nigeria (sub-Saharan Africa)
.
Anemia
.
2015
;
2015
:
791498
.
19.
Treadwell
MJ
,
Anie
KA
,
Grant
AM
,
Ofori-Acquah
S
,
Ohene-Frempong
K.
Using formative research to develop a counselor training program
.
J Genet Couns
.
2015
;
(24)2
:
267
-
277
.
20.
Anie
KA
,
Treadwell
MJ
,
Grant
AM
, et al
.
Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana
.
J Community Genet
.
2016
;
7
(
3
):
195
-
202
.
21.
Elsey
H
,
Abboah-Offei
M
,
Vidyasagaran
AL
, et al.
Implementation of the community-based health planning and services (CHPS) in rural and urban Ghana: a history and systematic review of what works, for whom and why
.
Front Public Health
.
2023
;
11
:
1105495
.
22.
World Health Organization
.
Guidance framework for sickle cell disease management and harmonized guide for sickle cell disease management in Africa
. Accessed
2
August
2024
. https://www.afro.who.int/sites/default/files/2024-06/WHO%20SICKLE_Module_4.pdf.
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