Stigma and epilepsy in onchocerciasis-endemic regions in Africa: a review and recommendations from the onchocerciasis-associated epilepsy working group

O‘Neill, Sarah; Irani, Julia; Fodjo, Joseph Nelson Siewe; Nono, Denis; Abbo, Catherine; Sato, Yasuhisa; Mugarura, Augustine; Dolo, Housseini; Ronse, Maya; Njamnshi, Alfred K.; Colebunders, Robert

doi:10.1186/s40249-019-0544-6

Cited by 30 publications

(35 citation statements)

References 81 publications

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“…The growth of the brain is also stunted, leading to mental handicap [ 1 – 3 , 5 , 7 ]. NS is still enigmatic, despite strong association with the parasitic worm Ov [ 2 – 4 , 10 , 19 , 22 ], with other environmental, psychological factors and autoimmunity [ 6 , 8 , 23 , 24 ].…”

Section: Discussionmentioning

confidence: 99%

“…In fact, Onchocerciasis (River blindness) is a leading neglected tropical disease that affects millions of people in Africa, Latin America and Asia, and causes morbidity, disability, low productivity and poverty in the endemic areas [ 18 , 19 ]. In the last few years, a wide family of Onhocerca Associated Epilepsy (OAEs) have been revealed, supporting a causative role of Ov in epilepsy too [ 20 – 22 ].…”

Section: Introductionmentioning

confidence: 99%

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Protection or susceptibility to devastating childhood epilepsy: Nodding Syndrome associates with immunogenetic fingerprints in the HLA binding groove

Benedek¹,

Latif²,

Miller³

et al. 2020

PLoS Negl Trop Dis

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Nodding syndrome (NS) is a devastating and enigmatic childhood epilepsy. NS is accompanied by multiple neurological impairments and neuroinflammation, and associated with the parasite Onchocerca volvulus (Ov) and other environmental factors. Moreover, NS seems to be an 'Autoimmune Epilepsy' since: 1.~50% of NS patients have neurotoxic cross-reactive Ov/Leimodin-I autoimmune antibodies. 2. Our recently published findings: Most (~86%) of NS patients have glutamate-receptor AMPA-GluR3B peptide autoimmune antibodies that bind, induce Reactive Oxygen Species, and kill both neural cells and T cells. Furthermore, NS patient's IgG induce seizures, brain multiple damage alike occurring in brains of NS patients, and elevation of T cells and activated microglia and astrocytes, in brains of normal mice. Human Leukocyte antigen (HLA) class I and II molecules are critical for initiating effective beneficial immunity against foreign microorganisms and contributing to proper brain function, but also predispose to detrimental autoimmunity against self-peptides. We analyzed seven HLA loci, either by next-generation-sequencing or Sequence-Specific-Oligonucleotide-Probe, in 48 NS patients and 51 healthy controls from South Sudan. We discovered that NS associates significantly with both protective HLA haplotype: HLA-B*42:01, C*17:01, DRB1*03:02, DQB1*04:02 and DQA1*04:01, and susceptible motif: Ala24, Glu63 and Phe67, in the HLA-B peptide-binding groove. These amino acids create a hydrophobic and sterically closed peptide-binding HLA pocket, favoring proline residue. Our findings suggest that immunogenetic fingerprints in HLA peptide-binding grooves tentatively associate with protection or susceptibility to NS. Accordingly, different HLA molecules may explain why under similar environmental factors, only some children, within the same families, tribes and districts, develop NS, while others do not.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Protection or susceptibility to devastating childhood epilepsy: Nodding Syndrome associates with immunogenetic fingerprints in the HLA binding groove

Benedek¹,

Latif²,

Miller³

et al. 2020

PLoS Negl Trop Dis

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“…Authors propose strategies to combat epilepsy stigma and the associated psychosocial consequences. 36 A recent publication has described how and why NS has become politicised in Uganda, the effect of this politicisation on health interventions-including research and dissemination-and the possible implications for disease prevention and treatment. 37 Rationale Scientific publications on NS have proposed several aetiological hypotheses, management algorithms and have described the associated social stigma, but none has obtained conclusive or effective results.…”

Section: Introduction Backgroundmentioning

confidence: 99%

“…Authors propose strategies to combat epilepsy stigma and the associated psychosocial consequences. 36 …”

Section: Introductionmentioning

confidence: 99%

Nodding syndrome: bridging the gap—a scoping review protocol

Castro

Ortega-Deballon

2020

BMJ Open

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IntroductionNodding syndrome (NS) is an encephalopathy of unknown origin that affects children aged between 3 and 15 years old. Cases have been reported since the 1950 in Tanzania and South Sudan, the most heavily affected population is the Acholi community in Uganda. In response to the high incidence of the disease, the Ugandan Government has developed a management algorithm, but access to such measures in affected communities is limited. There is little funding for research on the disease, consequently, few studies have been conducted to date. Nevertheless, the number of scientific publications on NS has increased since 2013, reporting several aetiological hypotheses, management algorithms and cases of stigmatisation; however, none has obtained conclusive results.This document describes a protocol for a scoping review of NS to date aimed at obtaining a broad overview of the disease. The results will identify gaps in knowledge in order to better guide future research, intervention strategies, health policies in areas at risk and cooperation and development programmes.Methods and analysisTo identify the relevant data, we will conduct a literature search using the electronic databases PubMed/Medline, Embase, Social Science Citation Index Scopus, Scientific Electronic Library Online (SciELO), Literatura Latinoamericana y del Caribe en Ciencias de la Salud (LILACS), Social Science Citation Index Expanded and The Cochrane Library. We will also include grey literature. The search strategy will be designed by a librarian.Two members of the team will work independently to identify studies for inclusion and perform data extraction. The search results will be assessed by two independent reviewers and data from the included studies will be charted and summarised in duplicate. The data will be summarised in tables and figures to present the research landscape and describe and map gaps.Ethics and disseminationEthical approval is not required. The scoping review will adhere to the Preferred Reporting Items for Systematic Reviews andMeta-Analyses-ScR guidelines. The results will be disseminated at scientific congresses and meetings.

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“…For some conditions, such as epilepsy, it has also been shown that parents may hide severely affected children to avoid stigma. 2,3 In such cases, children may be severely neglected, malnourished, and even sexually abused.…”

mentioning

confidence: 99%