The world’s first lupus prevention study, the SMILE clinical trial, was launched recently in the US.

SMILE will identify people who are at a high risk of developing lupus and treat them with an immune-modifying drug to determine whether this will prevent or delay lupus developing.

The drug being used for this study is hydroxychloroquine, a malaria drug. As well as exploring whether this drug delays or prevents lupus, the research team will determine if it improves disease activity and patient outcomes.

The trial will include people aged between 15 and 45 who are at high risk of developing lupus. They will be treated with either a placebo or hydroxychloroquine and then monitored for a period of time.

This study is taking place across five sites across the US – Penn State Hershey Medical Centre, the University of Texas Southwestern Medical Centre, Oklahoma Medical Research Foundation, Cedars-Sinai Medical Centre and the Medical University of South Carolina. Researchers aim to recruit 240 patients and the trial is likely to be completed in 2022.

This is an important study for the black community as black women are three to four times more likely to develop lupus than their white counterparts. Additionally black women  develop lupus at a younger age, experience more severe symptoms and overall develop more complications. Having a treatment that prevents lupus will significantly reduce the suffering of many black women worldwide and we thus look forward to the trial’s conclusions in a few years’ time.

For more information about the trial you can download the SMILE brochure below or email Virginia-Roberts@omrf.org

Back in June of this year the Lupus  Foundation of America and the American College of Rheumatology launched an awareness campaign  (Be Fierce. Take Control) aimed at African American and Latino women, who are both at an increased risk of developing lupus.

The campaign aims to raise awareness of the signs and symptoms of lupus to facilitate early diagnosis. An early diagnosis is important as it ensures that lupus sufferers can avoid some of the long-term effects of the condition. Lupus can take many years to diagnose as the symptoms are very vague and similar to a number of other conditions, this makes diagnosis very difficult.

The campaign has used social media and digital advertising to reach young black women. They have also created a website with useful resources such as:

• A ‘Could it Be Lupus?’ questionnaire which allows young women to determine whether their symptoms could be those of lupus.
• A lupus symptoms tracker to help women monitor their symptoms and to use at their next doctor’s appointment to explain their symptoms
• A guide to help those with symptoms prepare for their first doctor’s appointment

Although these resources were developed for African American women, they can be used by black women throughout the world who think they may have the symptoms of lupus.

What is Lupus?

Lupus is a chronic (it lasts a long time) disease where the body’s immune system doesn’t function properly and begins to attack healthy cells, tissues and organs.

There are four types of lupus:

•  Systemic lupus erythematosus (SLE) – affects a range of different organs in the body
•  Discoid lupus erythematosus (DLE) – affects the skin causing rashes and a change in the colour of the skin.
• Drug- induced lupus is caused by certain types of medication (for example hydralazine and procainamide which are used to treat heart conditions).
•  Neonatal lupus is a very rare type that affects new born babies

Black Women and Lupus

Black women are three to four times more likely to develop lupus than their white counterparts and results from the Lupus in Minorities study has shown that black women develop this condition at a younger age, experience more severe symptoms and overall develop more complications.

Researchers are trying to understand why it is more common in black women and why it is more severe. It is thought to be due to a combination of genetic and environmental differences.

More Information

For more information about the ‘Be Fierce. Take Control’ campaign, visit their website here and you can view the campaign video, Fierce Women Tackle Health, below

You can also get more information about lupus on website here, from Lupus UK or the Lupus Foundation of America