Innovative Trials are passionate about ensuring our diverse population is adequately represented within medical research. Whether it is wanting to see more people from underrepresented communities choosing science as a career and pushing for greater patient diversity in clinical trials or focusing on what we are doing internally to celebrate and promote equality and diversity. Today we celebrate World Lupus Day. So far the Equality, Diversity and Inclusion Committee at Innovative Trials wrote blogs to raise awareness surrounding several illnesses, their effects and treatments such as Endometriosis and Malaria.

Lupus is an uncommon, complex, and poorly understood disease. Many healthcare professionals, including General Practitioners (GPs), may not recognise the early signs resulting in a delay to referral and diagnosis. During this time, active lupus can cause damage to the kidneys, skin, heart, lungs and brain which may be irreversible. World Lupus Day is an important global event to raise awareness of this condition. (1)

What is Lupus and what are the key symptoms?

Lupus is a chronic autoimmune disease where the immune system is dysfunctional and mistakenly identifies the body’s own tissues as foreign invaders. In people with lupus, the immune system creates antibodies that attack the body’s own tissues (autoantibodies). These form immune complexes which cause inflammation and damage – affecting the organs and/or joints in some lupus patients. (1)

The most common symptoms of lupus are:
Joint/muscle aches and pains and extreme fatigue – almost 90% of lupus patients report experiencing fatigue which can often cause substantial impairments in quality of life and work disability.
Rashes, anaemia, light-sensitivity, headaches/migraines, hair loss, oral/nasal ulcers, brain fog, depression and anxiety.
An increased risk of miscarriage is a complication of lupus. However, with close monitoring, many people with lupus now have successful pregnancies.
It is important to note that there are many manifestations of lupus, and it is rare for two people to share the exact same experience. Other symptoms and triggers can be found on the NHS website – Lupus – NHS (2)

Who is most at risk for Lupus?

Lupus disproportionately affects females and people from Black African, Caribbean, and Asian ancestries. Often the lupus patient has family members with autoimmune conditions such as arthritis and rheumatism or others such as multiple sclerosis (MS), thyroid problems, diabetes, Raynauds, scleroderma, Sjogrens and others. (1)

What is the diagnosis and treatment for Lupus?

Diagnosing lupus is difficult as the range of symptoms can mislead GPs. Blood tests revealing high levels of autoantibodies, combined with typical symptoms, indicate that lupus is likely. Patients might be referred for X-rays and scans of the heart, kidney and other organs if the doctor thinks they might be affected. Once lupus is diagnosed, patients will be advised to have regular checks, such as regular blood tests to check for anaemia and urine tests to check for kidney problems. (2)

Current treatments for lupus include anti-inflammatory medicines like ibuprofen, hydroxychloroquine for fatigue and skin and joint problems. Steroid tablets, injections and creams are also used to treat kidney inflammation and rashes. Two medicines, rituximab and belimumab, are sometimes used to treat severe lupus. These work on the immune system to reduce the number of antibodies in the blood. (2)

Living with Lupus

Lupus symptoms can range from mild to severe, and patients suffer from regular periods of flare ups and remission. Alongside medication some things are advised for patients to do or avoid that can help manage symptoms:

Do

  • Use high-factor (50+) sunscreen – you can get it on prescription
  • If you have lupus learn to pace yourself to avoid getting too tired
  • Try to stay active even on a bad day
  • Try relaxation techniques to manage stress – stress can make symptoms worse
  • Wear a hat in the sun
  • Tell your employer about your condition – you might be able to adjust your working pattern
  • Ask for help from family, friends and health professionals
  • Eat a healthy, balanced diet, including vitamin D and calcium

Don’t

  • Do not smoke – stopping smoking is the most important thing to do if you have lupus
  • Do not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights (2)The Lupus Foundation of America has some useful resources and tools to help patients manage their symptoms – Coping with Lupus: a guide (3)

You can read further patient stories and their journey with lupus here – Lupus Trust: Patient Stories (4)

Lupus and Clinical Trials

Currently, there are 209 clinical trials actively recruiting for various lupus-related conditions.
ClinicalTrials.gov (5)

At Innovative Trials, we have supported various lupus studies including one where 52.6% of patients screened and 33.3% of patients randomised were from diverse populations, thanks to the delivery of our diversity outreach service. (6)

What is being done to raise awareness to the communities most at risk?

At Lupus UK, the charity looks to recruit Ambassadors and Trustees to support patients from diverse backgrounds.
– “We ask that potential Trustees familiarise themselves with our policies, in particular our Diversity, Equality and Inclusion Policy and our Code of Conduct. We are committed to ensuring diversity and representation throughout our charity, including at Board level. We also strongly believe that the Trustee’s behaviour meets a high standard to ensure that we can work together for the best outcome possible for LUPUS UK.” Trustee – Wendy Diment (7)
The charity also have videos available in hindi for the South Asian community – Yeh hai Lupus (This is Lupus) (8)

In 2022, the American Lupus Research Alliance (LRA) announced Inaugural Awards Promoting Diversity in Lupus Research. The Diversity in Lupus Research Award is funding mechanisms that aim to address underrepresentation of minorities in the scientific research profession. Read more on this at – Lupus Research Alliance (9)

 

References

  1.  LUPUS UK. (n.d.). Diagnosis. [online] Available at: https://www.lupusuk.org.uk/diagnosis/ [Accessed 10 May 2023].
  2. NHS (2019). Lupus. [online] NHS. Available at: https://www.nhs.uk/conditions/lupus/ [Accessed 10 May 2023].
  3. www.lupus.org. (n.d.). Coping with lupus: a guide | Lupus Foundation of America. [online] Available at: https://www.lupus.org/resources/coping-with-lupus-guide [Accessed 10 May 2023].
  4. Lupus Trust UK. (n.d.). Patient Stories — Lupus Trust – A Guy’s and St Thomas’ Charity (UK). [online] Available at: https://www.lupus.org.uk/patient-stories [Accessed 10 May 2023].
  5. clinicaltrials.gov. (n.d.). Search of: Recruiting, Enrolling by invitation Studies | lupus – List Results – ClinicalTrials.gov. [online] Available at: https://clinicaltrials.gov/ct2/results?cond=lupus&Search=Apply&recrs=a&recrs=f&age_v=&gndr=&type=&rslt= [Accessed 10 May 2023].
  6. Innovative Trials Ltd (n.d.). LOTUS Lupus Immunology Case Study. Innovative Trials Ltd.
  7. LUPUS UK. (n.d.). Trustees of LUPUS UK. [online] Available at: https://www.lupusuk.org.uk/trustees/ [Accessed 10 May 2023].
  8. LUPUS UK. (n.d.). Yeh Hai Lupus (This is Lupus) ये है लुपस. [online] Available at: https://www.lupusuk.org.uk/yeh-hai-lupus/ [Accessed 10 May 2023].
  9. Meislin, M. (2022). LRA Announces Inaugural Awards Promoting Diversity in Lupus Research. [online] Lupus Research. Available at: https://www.lupusresearch.org/lra-announces-inaugural-awards-promoting-diversity-in-lupus-research/#:~:text=The%20Diversity%20in%20Lupus%20Research [Accessed 10 May 2023].
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