May is Lupus Awareness Month! What do you know about it?

As May marks Lupus Awareness Month, it’s crucial to shine a light on this often misunderstood condition, especially here in Nigeria. Lupus remains a largely overlooked disease, but increased awareness can drive better understanding and support for those affected.

“When they were about to tell me what the problem was, I thought it was something much worse…my life had changed forever.” — Kemi Afolabi

While international celebrities like Selena Gomez have brought attention to lupus, in Nigeria, popular actress Kemi Afolabi shared her battle with lupus, highlighting the challenges faced by Nigerians with the condition. In her 2022 interview with Chude Jideonwo, she tearfully revealed her diagnosis, shedding light on the realities of living with lupus in Nigeria​​.

Living with lupus in Nigeria can feel daunting due to limited awareness and healthcare resources. However, advocates like Kemi Afolabi are breaking the stigma and raising awareness alongside international figures like Nick Cannon, Toni Braxton, and Lady Gaga. Kemi’s openness about her struggles has not only brought attention to the disease but has also inspired many to seek help and share their stories. 

This transparency is crucial in fostering understanding and support for those living with lupus. These international celebrities have also used their platforms to advocate for lupus awareness, significantly reducing the stigma associated with the disease and promoting more research and better treatment options. Nick Cannon, known for his battle with lupus nephritis, frequently shares his journey, emphasising the importance of early diagnosis and treatment. Toni Braxton, who has openly discussed her challenges with lupus, advocates for more funding and research. Lady Gaga, who has a family history of lupus, has used her influence to raise awareness about the disease’s impact on mental health​.

So, what is lupus?

Lupus is a chronic autoimmune disease that causes inflammation and pain in various body parts. It can affect the skin, joints, kidneys, brain, and other organs. A study by Ojo Osaze in 2023 found that lupus is particularly common among Nigerian women aged 30-40, often presenting as arthritis and skin manifestations like rashes. This underscores the need for increased awareness and early diagnosis in Nigeria. Understanding the disease and its manifestations is crucial for early intervention and management​.

The CDC outlines four types of lupus:

  • Systemic Lupus Erythematosus (SLE): The most common form affecting multiple organs and systems throughout the body.
  • Cutaneous Lupus: Primarily affects the skin, causing rashes and lesions.
  • Drug-induced Lupus: Triggered by certain medications, with symptoms usually subsiding after stopping the medication.
  • Neonatal Lupus: A rare condition affecting newborns born to mothers with lupus.

In Nigeria, SLE is the most commonly diagnosed type. Patients and healthcare providers need to be aware of the different types of lupus to ensure proper diagnosis and treatment​​​​.

Diagnosing lupus

Diagnosing lupus can be particularly challenging because its symptoms mimic those of many other diseases, making it hard to identify. Lupus affects the skin, joints, and internal organs like the kidneys and heart, leading to a wide range of symptoms that can appear slowly over time or suddenly. In Nigeria and across Africa, diagnosing lupus is often delayed due to several factors:

Complex Symptoms

Lupus presents with a variety of symptoms, such as extreme fatigue, joint pain, skin rashes, and sensitivity to light. These symptoms are common to many other illnesses, which can lead to misdiagnosis.

Limited Healthcare Access

Many areas in Nigeria have limited access to quality healthcare, which hinders early diagnosis and proper management of lupus.

Underfunded Healthcare Facilities

Many public hospitals are underfunded and lack the necessary resources and specialised training to diagnose and treat lupus effectively.

“One of the doctors eventually advised me on the specific test I needed, but since the test isn’t available here, it had to be conducted in South Africa.” – Kemi Afolabi

While there is ongoing research about lupus in Nigeria and how it is affecting the large population of women, here are common symptoms of lupus you should take note of; 

  • Extreme Fatigue: Feeling unusually tired even after enough rest.
  • Headaches: Frequent or severe headaches.
  • Low Fever: Persistent low-grade fever without a clear cause.
  • Sensitivity to Sunlight or Fluorescent Light: Skin reactions or fatigue after exposure to sunlight or fluorescent lights.
  • Joint Pain/Swelling: Persistent pain or swelling in the joints.
  • Raynaud’s Disease: Fingers and toes turning white or blue when cold or stressed.
  • Rash on Cheeks and Nose: A butterfly-shaped rash across the cheeks and nose.
  • Swollen Hands, Feet, or Around the Eyes: Swelling in these areas without an obvious cause.
  • Hair Loss: Noticeable thinning of the hair.
  • Mouth or Nose Sores: Sores in the mouth or nose that don’t heal quickly.

Because these symptoms can be easily mistaken for other illnesses, seeing a doctor is important if you experience several of these symptoms frequently and simultaneously.

What causes lupus?

Since the 19th century, when lupus was discovered till date, research on lupus has progressed significantly. Despite the absence of a cure, major causes of the disease have been identified. Here are three known causes of lupus:

Genes

Your genetic makeup, inherited from your parents, plays a significant role in determining your physical characteristics and attributes. Scientists have pinpointed over 50 genes that are prevalent among individuals with lupus. While possessing these genes alone typically isn’t sufficient to trigger lupus, they heighten the likelihood of developing the condition. Therefore, having relatives with lupus or other autoimmune disorders increases the probability of experiencing lupus as well.

Hormones

Hormones act as the body’s messengers, maintaining balance by transmitting signals between different body parts. Given their crucial role in bodily functions, researchers have explored the connection between various hormones and lupus.

Lupus predominantly affects women between the ages of 15 and 44, prompting researchers to examine oestrogen, a hormone found in higher levels in women than in men. Women often experience more lupus symptoms before menstruation and during pregnancy when oestrogen levels peak.

However, scientists have not established oestrogen as a direct cause of lupus, nor have they proven any causal relationship between oestrogen, or any other hormone, and lupus. Current research is delving into gender differences beyond hormone levels to understand better why women are more susceptible to lupus and other autoimmune diseases.

Environment 

Individuals predisposed to lupus due to genetic and hormonal factors may trigger the condition upon exposure to environmental elements. While scientists have yet to pinpoint the exact environmental triggers, potential culprits include:

  1. Sun exposure to ultraviolet light (UVA and UVB).
  2. Infections, with the Epstein-Barr virus being a likely candidate.
  3. Occupational exposure to silica dust is common among farm and industrial workers.

Additionally, other environmental factors may contribute to lupus development, such as.

  1. Certain medications like sulfa drugs, tetracycline drugs, and antibiotics.
  2. Emotional stressors such as the dissolution of a marriage or the loss of a family member.
  3. Physical strain or trauma on the body, such as injuries, surgeries, or childbirth.

According to the Lupus Foundation of America, 90% of adults living with lupus are women, and the disease is often seen in people of colour. Because of the severity of lupus and the necessity of treatment, people with the disease are often forced to live in debt to hospitals due to treatment costs. 

Treatment options for lupus

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Since lupus has no cure, survivors have no choice but to live with the disease. However, the disease has treatment options that can be used to manage and improve the quality of life. These treatment options include but are not limited to;

Corticosteroids

Corticosteroids, such as prednisone, are often prescribed to reduce inflammation and suppress the overactive immune response characteristic of lupus. They can help alleviate symptoms such as joint pain, skin rashes, and fatigue. However, long-term use of corticosteroids may lead to side effects like weight gain, bone thinning (osteoporosis), and increased susceptibility to infections.

Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

NSAIDs like ibuprofen and naproxen are commonly used to relieve pain and inflammation associated with lupus, particularly arthritis and musculoskeletal symptoms. They work by inhibiting the production of prostaglandins, which are chemicals that promote inflammation and pain. NSAIDs can be used on an as-needed basis for short-term relief, but prolonged use may increase the risk of gastrointestinal side effects like ulcers and bleeding.

Antimalarial Drugs

Antimalarial medications, such as hydroxychloroquine (Plaquenil) and chloroquine, are often prescribed to treat skin rashes, joint pain, and fatigue in lupus patients. These drugs have anti-inflammatory and immunomodulatory properties, helping reduce lupus disease activity and prevent flares. Additionally, antimalarials may have protective effects on organs like the kidneys and reduce the risk of cardiovascular complications in lupus patients.

BLyS-Specific Inhibitors

BLyS-specific inhibitors, such as belimumab (Benlysta), are a newer class of medications approved for the treatment of lupus. These drugs target the B-lymphocyte stimulator (BLyS), a protein involved in the activation of autoimmune B cells. By inhibiting BLyS, these medications help regulate the immune response and reduce disease activity in some lupus patients, particularly those with active disease, despite standard therapies.

Imunosuppressive Agents/Chemotherapy

In severe cases of lupus with organ involvement or significant disease activity, immunosuppressive agents, i.e. drugs that reduce the body’s chance of rejecting a transplanted organ or chemotherapy, may be necessary. These medications, such as methotrexate, azathioprine, mycophenolate mofetil, and cyclophosphamide, suppress the immune system to reduce inflammation and prevent damage to organs like the kidneys and central nervous system. However, they carry risks of serious side effects and require close monitoring by healthcare providers.

Other Medications

Other medications may be prescribed as part of the treatment regimen depending on the specific symptoms and complications of lupus. These may include pain relievers, such as acetaminophen, for mild to moderate pain, as well as medications to manage symptoms like high blood pressure, elevated cholesterol levels, and blood clots. Additionally, lifestyle modifications, such as regular exercise, stress management, and sun protection, are important components of lupus management alongside medication therapy.

Nigerian hospitals that offer lupus treatment and diagnosis 

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The rheumatology department in any hospital is responsible for treating patients with lupus. Rheumatology is a branch of medicine devoted to diagnosing and managing disorders like lupus, whose common feature is inflammation in the bones, muscles, joints, and internal organs. To help you locate a rheumatology hospital near you, here are a few hospitals in Nigeria with a rheumatology department that diagnoses and treats lupus. 

  • Toki Medical Centre 
  • Griggs Specialist Hospitals 
  • University of Nigeria Teaching Hospital
  • National Hospital Abuja 
  • Amina Kano Teaching Hospital 
  • Delta State University Teaching Hospital
  • Euracare Multi Specialist Hospital 

Lupus is not a death sentence. While it may not have a cure, we can make a difference in the lives of lupus survivors. Support them by contributing to research and donating to organisations dedicated to finding a cure. This Lupus Awareness Month, let’s stand in solidarity with survivors, applauding their strength and resilience. No matter how small, every donation brings us one step closer to a world where lupus is no longer a threat. Join us in celebrating the bravery of lupus warriors and advocating for a brighter future. Together, we can make a tangible impact and offer hope to those affected by this challenging disease.

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