Lupus is a largely unknown disease in India, though it is already a global health problem affecting millions of people world over. It has been Identified with a red butterfly rash on face. Lupus can damage the organs of the human body and can even lead to death if not diagnosed and treated early.
The awareness levels about Lupus is too little or negligible, making it difficult to treat properly. Majority of people mistake it as skin or ortho related problem and go for alternative medicines. They approach the specialists only at a late stage when the disease reaches its advanced stage when body organs are affected.
Lupus can affect any organ, however, it affects only a few parts of the body. No two individuals suffering from Lupus will have same body organs affected with Lupus.
For example, one person with lupus may have swollen knees & fever; another person may complain of lethargy/tiredness and yet another will complain of kidney trouble. This is what makes the diagnosis of Lupus disease difficult. It is still a challenge for the medical fraternity.
The severity of Lupus is quite unpredictable as it can affect any part of the body in any way at any time, often with unpredictable and life-changing results.
So What is Lupus and how do you get it?
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Lupus is considered to be a chronic disease as its signs and symptoms may last longer than six weeks to many years.
Dr Sashank Akerkar, rheumatologist says,
“Lupus makes the immune system unable to differentiate between foreign antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue and not just foreign antigens, causing swelling, pain, and tissue damage.”
Lupus is an autoimmune disease, which means the body’s natural immunity (against foreign elements such as viruses, bacteria and germs), starts to act up against its own body parts. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.
What is Lupus disease and what it is not
These are some additional facts about lupus that you should know:
- Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is underactive; in lupus, the immune system is overactive.
- Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Research estimates that at least 1 million Indians have lupus.
- It is believed that 5 million people throughout the world have a form of lupus.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers can develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.
Types of Lupus
When people talk about Lupus, most of the time they are usually referring to SLE (systemic lupus erythematosus), which is the most common type of lupus. However, in reality, there are several kinds of lupus:
1. Systemic Lupus Erythematosus SLE
SLE is the most common type of Lupus disease. It makes up about 70% of all cases of lupus. The severity of SLE varies from person to person. Some people may have mild SLE and others may have severe SLE. Its impact on organs also varies.
The most commonly known systemic lupus erythematosus symptoms are:
- Hair loss
- Sensitivity to the sun (photosensitivity)
- Painful and swollen joints
- Unexplained fever
- Skin rashes
- Kidney problems
2. Cutaneous Lupus Erythematosus CLE
CLE is limited to the skin (that is why it is called cutaneous, which means skin) and may be found on people suffering from SLE as well. Health care practitioner can find out the prevalence of Lupus by removing a small piece of the rash or sore and look at it under a microscope to tell if someone has skin lupus and what form it is.
The most common symptoms of Cutaneous Lupus Erythematosus CLE are:
- Hair loss,
- Vasculitis (swelling of the blood vessels),
- Ulcers, and
There are two major kinds of cutaneous lupus:
A. DLE (Discoid lupus erythematosus):
DLE mainly affects the skin. The discoid rash usually begins as a red raised rash that becomes scaly or changes colour to a dark brown. These rashes often appear on the skin on the face and scalp, but other areas may also be affected. Many people with DLE have scarring. Sometimes DLE causes sores in the mouth or nose. DLE generally converts to SLE over a period of time.
B. SCLE (Subacute cutaneous lupus erythematosus):
SCLE generally occurs along with SLE. Almost 10% of all Lupus patients are suffering from SCLE. SCLE causes skin lesions that appear on parts of the body exposed to the sun. These lesions do not cause scars.
3. Drug-induced lupus:
Drug-induced lupus is a form of lupus, which is caused by certain medicines used for the treatment of seizures, high blood pressure or rheumatoid arthritis. The symptoms of Drug-Induced Lupus are similar to SLE, however, it does not affect body organ. It is generally mild and can include joint pain, muscle pain and fever
4. Neonatal lupus:
Neonatal lupus is a rare condition in infants that is caused by certain antibodies from the mother. These antibodies can be found in mothers who have lupus. But it is also possible for an infant to have neonatal lupus even though the mother is healthy. However, in these cases, the mother will often develop symptoms of lupus later in life.
At birth, an infant with neonatal lupus may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months and have no lasting effects.
Infants with neonatal lupus can also have a rare but serious heart defect.
With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are healthy.
Lupus Symptoms: How to identify, if you are suffering from Lupus
Most common symptoms of lupus can vary from one person to another. The most common lupus symptoms may include
- Joint and muscle pain,
- Overwhelming fatigue,
- Skin rashes,
- Fever, and
- Hair loss.
A lupus patient will have all or at least some of the above-listed symptoms.
Some manifestations of lupus are not immediately apparent, and early diagnosis plays an important role in preventing damage to vital organs. If you think you might have lupus, you should see your doctor.
Since no single test can diagnose lupus, so your doctor will need to take blood for a variety of tests. Your family health history and your own health history are also important parts of a lupus diagnosis.
To identify, follow the exhaustive lupus checklist given below. If you have multiple symptoms talk to your health care professional about lupus.
Lupus Symptoms checklist
Lupus and Skin Problems
- A reaction to the sun or light that causes a skin rash to appear or to get worse,
- Redness or rash across your nose and cheeks or other unexplained rashes,
- Sudden, unexplained hair loss,
Lupus Joints Pain and its impact on Muscles
- Achy, painful and or swollen joints for more than three months,
- Persistent, extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep,
Lupus symptoms on Brain and Nervous System: Lupus brain fog symptoms
- Seizure or unexplained confusion that lasted for more than an hour,
- Unexplained fever higher than 100º F for more than a few days,
Lupus Lungs symptoms
- Chest pain while taking deep breaths,
Lupus symptoms on Eyes, Nose, and Mouth
- Sores in your mouth or nose that lasted for more than five days, or sores on your skin that would not heal.
Lupus symptoms on Blood and Circulatory System
- You have anaemia, low white cell count, or low platelet count,
- Fingers and/or toes become red or blue, or feel numb or painful,
- Blood clotting problems or a miscarriage,
Lupus symptoms on Kidney
- You have protein in your urine, and
- Swelling in your legs and ankles on both sides at the same time.
What Causes Lupus
The causes of lupus remain unknown, but scientists believe three factors may play a role: heredity, hormones, and environmental factors. No single gene or group of genes has been proven to cause lupus.
Lupus does, however, appear in certain families, and certain genes have been identified as contributing to the development of lupus.
Two of the environmental factors are ultraviolet rays from the sun (which can activate inflammatory cells in the skin) and certain medicines. Also, infections and stress might play roles in triggering flares in some people.
Lupus is not contagious. You can’t ‘catch’ lupus or give lupus to someone else.
Lupus Diagnosis: Lupus disease diagnosis
Health care practitioner identifies the prevalence of Lupus on the basis of the following things:
- Medical History,
- Physical Examination,
- Laboratory tests. These tests include:
- ESR (Erythrocyte sedimentation rate): The ESR measures inflammation.
- CBC (Complete blood cell count): The CBC counts blood cells and platelets.
- ANA (Antinuclear antibody): The doctor may order an anti-DNA test, which is more specific for SLE.
Life with Lupus
Dr Vijay DSilva, explains to TOI,
“Lupus is a non-contagious chronic disease of unknown causes that is very difficult to diagnose and treat, sometimes over-diagnosed and more often than not, diagnosed with great delay. This is not a one-cause one-cure illness. This illness presents in a variety of ways and its clinical manifestations depend on the organs chosen by the immune system for attack.”
Although there is no cure for lupus, early diagnosis and proper medical treatment can significantly help to control the disease.
Life expectancy for lupus patients
Because no two people with lupus are alike, the best treatment approach is with a health care team that will tailor treatment to your specific condition. People who are most successful at living with lupus have learned to balance their lives while living with a chronic illness.
Maintain a healthy diet, get plenty of rest, avoid stress and exposure to the sun and ultraviolet light, stop smoking and drink only in moderation.
Increasing numbers of research projects on lupus are under way, looking for new and improved treatments to manage lupus, and, one day, to find a cure.
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