For Lupus Awareness Month this year, I really wanted to highlight various populations that deal with lupus – specifically Middle Eastern groups of people and also Indian-Caribbean. We do not hear much about these populations when combing through lupus statistics…or do we? Through research, I found that almost all studies pulled up online often lump those of Middle Eastern and Indian descents as “White” or “Caucasian”, and these miscalculations are causing inaccurate numbers of lupus and coinciding population groups.
In fact, if you search specifically for Middle Eastern populations living with lupus, you will be hard pressed to find a solid amount of information. For Lupus Awareness Month,Lupus Chick founder & author, Marisa Zeppieri (Middle East & Italian descent), and Ayanna Dookie (Indian-Caribbean and Afro-Caribbean descent), comedian/host and co-founder of the HydroxychloroQUEENZ podcast, partnered with the Lupus Foundation of New England to bring awareness to underserved and underreported populations in the Lupus community.
Our hope and our ask is future research and studies will report and calculate populations within studies as Middle Eastern groupings or Indian-Caribbean, etc. rather than grouping certain ethnicities into White or Caucasian. By doing this, we will have improved accuracy regarding incidence and prevalence of SLE in these populations.
Here are a few excerpts from studies on this concerning topic:
“There are currently no accurate studies of the incidence or prevalence of SLE in Africa, the Middle East or South Asia. A recent UK study, which is one of few to subdivide South Asian ethnicity into subgroups, found that Indian ethnicity is associated with higher incidence (9.9 per 100 000) and prevalence of SLE (193 per 100 000), although not as high as in Afro-Caribbeans (incidence 31.5 and prevalence 518 per 100 000). The incidence (10.0 per 100 000) of SLE was higher in UK Pakistanis, although the prevalence was not increased (143 per 100 000) .” — Study: The Effect of Ethnicity and Genetic Ancestry on the Epidemiology, Clinical Features and Out come of Systemic Lupushttps://academic.oup.com/rheumatology/article/56/suppl_1/i67/2629213, Myles J. Lewis, Ali S. Jawa, Rheumatology, Volume 56, Issue suppl_1, April 2017, Pages i67–i77
“The age-adjusted incidence and prevalence among UAE Arabs is higher than has been reported among most other Caucasian population.” — Study: Incidence and prevalence of Systemic Lupus among native Arab population in UAEhttps://pubmed.ncbi.nlm.nih.gov/27831539/ — A M Al Dhanhani 1, M Agarwal 2, Y S Othman 3, O Bakoush 1
“A recent UK retrospective cohort study also confirmed the highest incidence and prevalence of SLE in people with black Caribbean ethnicity and a higher prevalence in Asian compared to white patients . Similarly, in a large French nationwide study, the prevalence of SLE was also much higher in the Caribbean overseas areas and lowest in the French northwestern metropolitan territories .” — Study: Lupus Nephritis: A Different Disease in European Patients?https://www.karger.com/Article/Fulltext/438844 – Tesar V. · Hruskova Z.