Lupus Foundation SA | What is Lupus

WHAT IS LUPUS

Types of Lupus


1. Systemic Lupus Erythematosus – SLE

Most common and serious form of Lupus which is a chronic connective tissue disease. This disease may effect several body systems which is why it’s called "systemic" and is also known as the "great imitator" because it mimics other illnesses. Lupus can affect the skin (skin lesions and painful nodules that appear as raised bruises), joints (fingers, hands, wrists and knees) , kidneys, lungs, heart and the central nervous system. SLE can range in severity and symptoms may come and go, the body undergoes phases of flares and the person with Lupus will suffer the aggressive effects and there are times when we experience quieter phases called remission. Some develop a rash over the cheeks and across the bridge of nose in a butterfly shape. Healthcare professionals call this a "malar rash".


2. Discoid Lupus Erythematosus - DLE

The most common form of chronic (long term) Cutaneous Lupus Erythematosus, mainly presents itself as a dermatological disease that is noticeable from hyperpigmentation changes of the skin known as melanin. Exposure to the sun may trigger DLE thus making patients photosensitive and the rash may be red, flat or slightly raised, and can appear scaly. It can also evolve into a larger disfiguring rash from the merging of several disc-shaped (discoid) patches called lesions. A small percentage of people who have cutaneous lupus will later develop systemic lupus. DLE causes a thick scaly rash on the face, neck and scalp and does not itch, after the rash subsides it leaves scarring to the face and scalp which can lead to hair loss as well e.g. Malar rash or butterfly rash


3. Drug-Induced Lupus Erythematosus - DILE

This lupus is rare and is caused by taking certain prescription drugs for a long period of time. The most common medications linked to this form are isoniazid, hydralazine and procainamide yet there are common widespread of other medications that are also known to be a trigger or an onset of the disease. Signs and symptoms usually disappear soon after your doctor discontinues that drug. It is imperative that you tell your doctor about all the medications you are taking and all the side effects Signs and symptoms are joint pain(Arthralgia)and muscle pain (myalgia), Fatigue, Inflammation of the heart (pericarditis),and lung (pleuritis) Anti-histone antibodies in 95% of cases. Similar to regular Systemic Lupus Erythematosus they are not as severe unless they are ignored and lead to harsh symptoms, and in some cases death.


4. Neonatal Lupus Erythematosus – NLE

Neonatal Lupus occurs when the mother with certain kinds of Lupus antibodies (Ro and La) transfers them to her child during pregnancy. Please note that during pregnancy the foetus is unable to form antibodies on its own, this possess danger as we all need the immune systems to defend the body against the threat (viruses) or bacteria. During pregnancy antibodies are circulated across the placenta into the bloodstream of the developing foetus. The movement of the maternal antibodies begins at about 12 to 14 weeks of pregnancy. The foetus depends entirely on the maternal antibodies to fight against the bacteria; unfortunately the placenta cannot distinguish between antibodies and autoantibodies. There are no known reasons why the autoantibodies affect the very building block of the whole body system of the foetus and for unknown reasons in neonatal lupus the attacks is mostly targeted to the heart tissue, congenital heart block, skin, liver abnormalities , blood elements (low blood counts) and skin rash triggered by sun exposure. If there are some of the symptoms mentioned above the parents should get professional help to check for liver abnormalities, low white blood cells and platelets, some of the symptoms may not be permanent.


Facts about lupus


1. It's a chronic illness

  • Symptoms may come and go, but the disease must be managed long-term. There is currently no known cure for Lupus


2. It's an immune disease

  • ‘Auto’ means ‘self’ in Lupus, the immune system gets overactive and works incorrectly leading to your body attacking itself


3. It's not a one size fits all disease

  • Lupus can look like many other diseases and have similar symptoms, yet the symptoms vary for different people, which make it difficult to diagnose.


4. Factors that may play a role with Lupus

  • Gender and Sex Hormones:
    Women get Lupus much more often than men as Estrogen levels may influence both the development and activity of Lupus
  • Genetics:
    Lupus has a tendency to appear in some families more than others
  • Environment:
    UV rays from the sun or fluorescent light bulbs, medications that make you sensitive to the sun, infections, colds and viral infections
  • Physical and emotional stress:
    Exhaustion and stresses to the body such as surgery, physical injury, pregnancy or giving birth


5. The challenges of Diagnosing Lupus and how to treat Lupus

  • Most autoimmune diseases are difficult to diagnose especially at the earlier stage and multiple organs are involved therefore blood tests that indicate the presence of inflammation may suggest an autoimmune disorder/disease

  • Lupus is sometimes called the "great imitator" because it shares symptoms with so many other disease, it is not uncommon for Lupus diagnosis to take months or even years to diagnose.

  • Rheumatologists and Physicians are more likely to make a Lupus diagnosis and management than other type of Doctors.

  • The following specialists are also be of great significance in diagnosing Lupus – Clinical Immunologist, Nephrologist (kidneys), Haematologists (blood disorders), Dermatologists, Neurologists, Cardiologists, Endocrinologists.

  • For management of your treatment plan the patient needs Nurses, psychologists and social workers for support and managements of the disease unfortunately there are few that understand the disease therefore the foundation will also be helping them by having workshops on what to look for in patience and if there is suspicion that the patient might have Lupus, have their bloods drawn to check for the antinuclear test, platelets levels and low white blood cells so that they are able to give the necessary support management to Lupus patients.

  • The goal of the treatment plan and team is to assist in preventing flares, treat flares when they occur,reduce organ damage and other problems, reduce swelling and pain, prevent or reduce flares, reduce and prevent joint pain, help the immune system and balance hormones.

  • If you think you may have Lupus ask your primary care giver to provide you with a referral to a rheumatologist


Who can get lupus


  • Heredity is sometimes involved but there is no particular or specific gene or infection that can cause Lupus but a multiple of genes can be the cause therefor people with those particular genes may get the disorder even when the onset is triggered by environmental factors

  • Lupus is genetically inherited with triggers such as viral infection or tissue damage.

  • Lupus most often affects women between child bearing ages (15 to 45) due to hormonal changes therefore 9 out of 10 people with Lupus are women.

  • Lupus is more common in Hispanic (people from Spanish-speaking country) and African women than in Caucasian women.

  • Lupus may also be triggered at an earlier age NLE, even before birth if the mother has the multiple genes that can cause Lupus and experience severe symptoms.

  • Often people living with Lupus experience some of the ”invisible effects” and usually get remarks like “But you don’t look sick”, “you are lazy”, “you are exaggerating”, “you are looking for attention”. The challenge is that the people we love and live with don’t believe us when we tell them how Lupus makes us feel. The fact that you are most of the time fatigued gets annoying to the family and it feels like you are burden and then we soldier on and pretend to be fine just to reassure those close to you. It is nearly impossible to care and contribute for the family the way we want to because even if you look fine you may not feel fine to participate in family activities. Friends and family believe we can do more than what we can accomplish because we look healthy.

Symptoms


1. General Symptoms

  • Butterfly-shaped rash on the cheeks and the bridge of the nose
  • Skin rash due to exposure to the sun
  • Fever
  • Fatigue
  • Weight loss
  • Hair loss
  • Arthritis in multiple joints
  • Sores in the mouth or nose
  • Raynaud Phenomenon (is excessively reduced blood flow in response to cold or emotional stress)
  • Blood or protein in the urine, various blood vessels or particular organs such as the kidneys, the lungs, the brain and the heart.
  • Inflammation and tissue damage causes pain, deformed joints, weakness, jaundice, itching, breathing difficulties, oedema (accumulation of fluid) which is fatal and may cause death.


2. Central nervous system

  • Depression
  • Stress & Anxiety
  • Seizures & Strokes
  • Headaches
  • Memory Loss