Reham Al-Samawi & Khawla Al-Samman
"My 45-year-old mother was suffering from severe pain and a high fever. As a result, we rushed her to one of the major hospitals in the capital city, where she was diagnosed with lupus (SLE). Over the course of the next four years, my mother endured a bitter treatment journey. Her body initially responded well to the treatment during the first two years, but her condition began to deteriorate over time. By the fourth year, the disease had reached its peak, and there was no way to save her. She passed away after a long struggle with the illness," says Samia Al-Wajeeh to "Khuyut."
Similarly, engineer Ibrahim Al-Ghuwaidi shares with "Khuyut" the story of his late sister's struggle with lupus, saying: "My sister, Mona, suffered greatly. The diseases spread progressively from one organ to another—starting with the heart, then the liver, followed by other issues in the urinary system, and then severe pain and inflammation in the joints, bones, and blood, eventually affecting her stomach and colon, all due to this unfamiliar disease, which, as the doctors confirmed, generates numerous other illnesses."
Al-Ghuwaidi continues: "Shortly after my sister contracted lupus, she began to experience pain in her breast, which was a turning point, as it led to the discovery of a disaster. She was diagnosed with stage 3 breast cancer. As a result, the breast was removed; however, due to her lupus, she was unable to undergo radiation therapy after the surgery. She was limited only to chemotherapy and was advised to avoid sunlight, which led to the emergence of a new condition called Behcet's disease. This ultimately marked the end of her journey."
A Rare and Chronic Disease
Wafa Mohammed, a lupus patient, shares her story with "Khuyut," stating: "I thought the rash on my face was just a sun-induced darkening "malesma" due to the intense sun exposure in the countryside, especially since I had never heard of this disease before. However, over time, I started experiencing joint pain that ranged from mild to severe, along with a constant fever. I tried using fever-reducing medications, but they were all ineffective, forcing me to seek treatment in the city."
Wafa continues: "After undergoing tests, I was diagnosed with lupus. I couldn't understand what the disease was; I didn't know its causes, symptoms, or implications. As a result, I didn't give it much importance until I returned to the doctor. I was shocked to learn from him that it was a serious and chronic illness."
It is worth noting that this disease affects five people out of every 100,000 annually worldwide, at any stage of life. Women are nine times more likely to develop the disease than men, particularly during their reproductive years (ages 15 to 45).
“Symptoms of the disease include: a butterfly-shaped rash around the nose and cheeks, especially after sun exposure; hair loss; chest pain; difficulty breathing; easy bruising; joint pain and stiffness; swelling in the hands, feet, abdomen, or around the eyes; brown-colored urine or foamy urine; and high blood pressure.”
Different Causes of the Disease
In a related context, Dr. Nabeel Al-Ashmouri, a rheumatology specialist, tells "Khuyut": "The causes of lupus remain unknown, as the triggers for the disease are still under study. It may result from a combination of genetic and environmental factors. This means that a person could inherit a predisposition to the disease (particularly if they have family members affected). However, they may not develop it unless exposed to certain environmental triggers, such as a viral infection or the use of certain medications. In some cases, exposure to sunlight can also be a factor. Additionally, smoking, chronic stress, or everyday psychological pressure are considered environmental factors that may contribute to the onset of the disease."
Al-Ashmouri adds: "Science has not yet been able to explain why symptoms of lupus appear in intermittent flare-ups, followed by periods of improvement. However, it is also important to note that in some lupus patients, the symptoms remain constant and do not appear in the form of flare-ups."
For his part, psychologist Mohammed Al-Nabhi points out that psychological stress plays a significant role in exacerbating the disease and worsening the patients' health. He explains to "Khuyut," stating, "Psychological pressure resulting from stress, tension, and social problems worsens the condition, as it negatively affects hormonal balance, which in turn triggers lupus flare-ups and attacks, and further deteriorates the patient's health."
On the other hand, he emphasized that scientific research indicates that 25% of lupus patients suffer from severe depression, while 37% experience severe anxiety.
Overlapping Symptoms of Lupus
"Lupus can affect any part of the body, and the symptoms and signs of lupus vary depending on the type of the disease and the organs it affects. These common symptoms include a butterfly-shaped rash around the nose and cheeks, especially after sun exposure; hair loss; chest pain; difficulty breathing; easy bruising; joint pain and stiffness; swelling in the hands, feet, abdomen, or around the eyes; dark-colored urine or foamy urine; high blood pressure; cold and pale fingers or toes; extreme and persistent fatigue; weight loss; headaches; as well as difficulty thinking, and feelings of anxiety and sadness," Dr. Al-Ashmouri explains.
Various Fatal Complications
Al-Ashmouri continued his discussion on the major consequences of lupus, stating: "The inflammation caused by lupus has detrimental effects on various organs and systems in the body, especially when diagnosis is delayed or treatment is overlooked and neglected. Hence, this can lead to serious complications, such as kidney failure and cardiovascular diseases, including blood clots, vasculitis, and myocarditis, thereby increasing the risk of heart attacks. Additionally, it can affect brain health, leading to memory impairment and seizure-like episodes similar to epilepsy. Moreover, it elevates the risk of stroke and lung diseases, including pleuritis—an inflammation of the membrane surrounding the lungs, which can cause fluid accumulation around the lungs."
He further elaborates on the broader implications of lupus on the body, stating: "Among the other complications are an increased risk of cancer, immune deficiency, urinary tract infections, pneumonia, fungal infections, salmonella, herpes, and shingles, as well as skeletal issues such as osteoporosis. Additionally, pregnant women with lupus are at a higher risk of miscarriage, arterial hypertension, preeclampsia, and premature birth."
The Four Different Types of Lupus
Ashmouri differentiates between several types of lupus, including:
1. Systemic Lupus Erythematosus (SLE): The most common and severe type, accounting for over 70% of reported cases. It typically causes inflammation in various organs of the body.
2. Discoid Lupus Erythematosus: This type affects only the skin and is characterized by circular, disc-shaped rashes.
3. Drug-Induced Lupus: This occurs as a complication from certain medications and can affect multiple organs.
4. Neonatal Lupus: A very rare form that affects newborns. One of its hallmark signs is a skin rash that may appear in infants for several months before completely resolving, although it can occasionally lead to disruptions in the child’s cardiac electrical system.
“Diagnosing lupus can be challenging due to the similarity of its symptoms with other diseases, such as anemia, low platelet count, hair loss, sun sensitivity, persistent fever, and joint pain. These symptoms overlap with those of dengue fever, typhoid, brucellosis, or malaria, making early diagnosis difficult, which explains the public's lack of awareness of the disease.”
Women Are the Most Affected
Likewise, Dr. Mohammed Al-Himyari, an internal medicine physician, states in an interview with "Khuyut" that lupus significantly affects women due to higher estrogen levels, with a prevalence rate of 90% among them compared to men and children. He adds, "All the cases we have received were women, and unfortunately, most of them were in advanced stages of the disease."
Therefore, doctors advise women not to become pregnant until lupus is well-controlled and the disease has been inactive for at least six months.
Al-Himyari points out that the disease is usually treated within internal medicine or rheumatology departments, as there is no specialized medical staff dedicated specifically to lupus.
For her part, Dr. Yasmeen Al-Qadi, an internal medicine specialist, explains how lupus is diagnosed, saying: "The diagnosis starts with a clinical examination based on the numerous symptoms that may indicate the disease, followed by lab tests that detect the presence of antibodies in the patient's blood."
Dr. Al-Qadi confirms in her interview with "Khuyut" that while some patients may recover, lupus is a chronic condition that requires lifelong medical treatment and follow-up.
Moreover, Al-Himyari also points to the reasons behind the lack of early detection of the disease, explaining: "Diagnosing lupus can be challenging due to the similarity of its symptoms with other diseases, such as anemia, low platelet count, hair loss, sun sensitivity, persistent fever, and joint pain. These symptoms overlap with those of dengue fever, typhoid, brucellosis, or malaria, making early diagnosis difficult, which explains the public's lack of awareness of the disease."
“Lupus is a chronic disease, and although there is no definitive cure, there are various treatments available that can alleviate its symptoms, limit damage to vital organs, and decrease the risk of disease flare-ups. These treatments include non-steroidal anti-inflammatory drugs (NSAIDs), hydroxychloroquine, steroids, and related medications.”
Science vs. the Disease
In this context, Al-Ashmori explains that lupus is a chronic disease, and although there is no definitive cure, there are various treatments available that can alleviate its symptoms, limit damage to vital organs, and decrease the risk of disease flare-ups. These treatments include non-steroidal anti-inflammatory drugs (NSAIDs), hydroxychloroquine, steroids, and related medications.
He continues: "For the severe form of lupus, treatment involves high doses of corticosteroids, immunosuppressive drugs, and biological therapies."
Despite that, studies indicate that modern treatments have improved survival rates, with approximately 80% of those diagnosed living more than 15 years post-diagnosis. The global incidence of lupus varies, ranging from 20 to 70 cases per 100,000 people.
For her part, Dr. Safaa Al-Sharji warns against sun exposure, advising patients to use sunscreen every four hours, especially from 10 AM to 3 PM. She also recommends avoiding smoking, wearing protective clothing, and following the medical instructions given by the doctor.
On the other hand, it is noteworthy that the National Institutes of Health in the United States of America classifies lupus as a chronic autoimmune disease characterized by episodes that can range from mild to severe. The manifestation of lupus varies from person to person and can affect different areas of the body, including the skin, joints, heart, lungs, and kidneys.
To raise awareness about this relentless disease, the world designates May as Lupus Awareness Month every year, focusing on the urgent need to improve healthcare services for lupus patients and to increase research efforts into the causes and treatments of the disease.
