Author: Dr Sandra Bonsu

World Lupus Day is celebrated on 10th May every year. Whether you know someone affected by Lupus or are currently living with Lupus, this celebration provides the opportunity to shed some light and raise awareness on a condition that is often unseen.

Unfortunately, for many individuals, the first knowledge of Lupus is often in a doctors’ consultation room, while receiving the diagnosis of Lupus for the very first time after months of confusing and unexplained signs and symptoms.

If you are fortunate enough to read or listen to the journey of a Lupus sufferer, you will learn of the immense anxiety, the fear and the mental turmoil that comes with a diagnosis of Lupus. You will also learn of the impact of Lupus on an individual, their work, their relationships, their friends and their family.

Lupus, a chronic autoimmune condition in which the immune system mistakenly attacks healthy organs or tissues, thus resulting in widespread inflammation and cell damage. It is a complex disease characterised by an array of signs and symptoms which includes but are not limited to the following; cutaneous manifestations such as the malar facial rashes, Joint pains, dry eyes, headaches, mouth ulcers, hair loss, extreme fatigue, weakness, changes to weight, poor circulation in fingers and toes, mood changes, seizures and kidney problems. These symptoms often mimic that of other conditions and have a relapsing /remitting course, which rather makes diagnoses difficult. It is important to note that not all lupus sufferers experience these symptoms, and the intensity of disease expression can vary from mild to severe.

There are four main types of Lupus which include; Discoid or Cutaneous Lupus Erythematosus, Systemic Lupus Erythematosus, Drug-induced Lupus Erythematosus and Neonatal Lupus Erythematous, however for the remainder of this article, I will focus on Systemic Lupus Erythematosus (SLE).

It is thought that the global prevalence of SLE in adults is 61.08 per 100 000 persons, which corresponds to approximately 3.17 Million people worldwide [1], this is with the knowledge that epidemiological data for 79% of countries world-wide on SLE are lacking, potentially meaning this could be a huge underestimation.

90% of those affected by SLE are women within their reproductive years between the ages of 15-44. At present, it is thought that SLE is infrequent, perhaps even rare in Africa especially West Africa, but interestingly data from Europe and the United States suggests that SLE appears to be more prevalent in people of African origin [2] living in the diaspora. That poses the question; is SLE truly infrequent in Africa, or do we simply not have the data which reflects the true picture. The current accepted train of thought is that environmental factors in Europe and United States may be the major contributor to the development of SLE in individuals of African origin.

Lupus, the hidden disease

When reading individual accounts of Lupus sufferers in Europe, especially those from ethnic backgrounds, there is often a sense of the need to hide the diagnosis from family and friends. Lupus, unlike other conditions such as type 2 diabetes, high blood pressure or even sickle cell anaemia, is not talked about. Cultural and religious practices especially amongst first generations in the diaspora means that affected individuals feel pressured to keep their diagnosis to themselves.

Fears around being labelled as lazy, too sick, unemployable, ability to conceive and sustain a healthy pregnancy, especially for young females all drive this. Open discussion is not encouraged. In some cases, with little to no physical manifestation of lupus, the condition continues to remain unseen and hidden.

However, days like 10th May, World Lupus Day, Lupus awareness month, and organisations such as Lupus.org, Lupus UK, and Lupus trust together with individuals, charities and rheumatologist across the globe are changing this narrative. Sharing their stories, organising community events, fundraising, and putting out online campaigns are all helping to make Lupus known and seen.

At present, there is no cure for SLE, and as scary as it sounds, it is possible to live a very “normal life” given early diagnosis, correct treatment, and appropriate support from family and friends.

If you are unfamiliar with Lupus or have been introduced to it for the first time via this introductory piece, I hope that, at the very least, it prompts you to find out more. I hope it challenges you to think about people living with chronic and unseen conditions such as lupus.

Ask yourself, what can I do to help make someone suffering from an unseen disease/ illness life easier. You never know, a simple text or phone call could be what that individual needs to help them get through their already challenging day. A simple prompting from yourself may be what leads to an early diagnosis and intervention for that individual.

References

1. Tian J, Zhang D, Yao X, et al Global epidemiology of systemic lupus erythematosus: a comprehensive systematic analysis and modelling study. Annals of the Rheumatic Diseases 2023;82:351-356.
2. Symmons DP. Frequency of lupus in people of African origin. Lupus. 1995 Jun. 4(3):176-8.