World Lupus Day

World Lupus Day takes place every year on the 10th May. This year it will be taking place on Thursday 10th May 2018 and it serves to call attention to the impact that lupus has on people around the world. The annual observance focuses on the need for improved patient healthcare services, increased research into the causes of and cure for lupus, earlier diagnosis and treatment of lupus, and better epidemiological data on lupus globally.

World Lupus Federation

World Lupus Day is sponsored by the World Lupus Federation, a coalition of lupus patient organizations from around the world, united to improve the quality of life for people affected by lupus. Through coordinated efforts of its global affiliates, the World Lupus Federation works to create greater awareness and understanding of lupus provide education and services to people living with the disease, and advocate on their behalf.

Lupus UK

Lupus UK are a national charity helping people with the presently incurable immune system illness known as lupus. They support around 6,000 members through their regional groups and advise many others on the symptoms prior to diagnosis. Their main vision is a world where people with lupus can live full and active lives. Their main mission is to empower people by providing information about lupus and offering support, so their voices are heard and their condition is diagnosed and managed effectively. 

How can you get involved with World Lupus Day?

Sign the Awareness Pledge

Download World Lupus Day Toolkits 

Make a Donation to Lupus UK 

Join Lupus UK Apply by downloading and filling out application form 

Purchase a membership from their online store 

Fundraising for Lupus UK 

• Share your story and spread the word on social media by either recording a video, share a photo or image, write a blog, write your own story use the hashtags #WorldLupusDay and #LupusAwareness

What is Lupus?

Lupus is an autoimmune condition where the immune system whose job is to fight foreign substances in the body, like bacteria and viruses mistakenly attacks healthy tissues. If you have lupus it may affect some of your body parts including joints, skin, kidneys, lung, heart and brain. Lupus is a chronic autoimmune disease in which the body's immune system becomes hyperactive and attacks normal, healthy tissue. Up to 50,000 people are thought to have lupus, according to Lupus UK.

What are the different types of lupus?

Systemic lupus erythematosus (SLE) - This condition is the most common form of lupus and is what most people mean when they refer to lupus. The word 'systemic' means that the disease can involve many parts of the body and any organ. It can affect a person’s quality of life through pain, fatigue, and associated depression and anxiety. SLE symptoms can be mild or severe.

Discoid lupus erythematosus (DLE) - Discoid lupus erythematosus is typically a milder type of lupus that usually only affects the skin. Symptoms include red, circular, scaly marks on the skin, hair loss and bald patches. A person with DLE may have to avoid direct sunlight.

Drug-induced lupus - More than 100 medications are known to cause lupus symptoms in some people. It is similar to SLE, but symptoms are usually milder. These usually stop if the medication is stopped or changed after seeking medical advice.

What are the common symptoms of lupus?

• Joint Pain and swelling

• Unexplained fever

• Painful or swollen joints

• Fatigue/extreme prolonged tiredness

• Skin rashes

• Low blood count

• Migraine

• Shortness of breath

• Swollen glands

• Poor circulation in fingers and toes

How is lupus diagnosed?

The diagnosis is made when a person has several symptoms of the disease. Blood tests may be carried out to help confirm a lupus diagnosis. No single test can show that you have lupus. Your doctor may have to do several tests and study your medical history. It may take time for the doctor to diagnose lupus. Telling a doctor about your symptoms and other problems you have had can help them understand your situation. Your history can provide clues to your disease. The doctor will look for rashes and other signs that something is wrong. Blood and urine samples may be taken. Blood tests often show if your immune system is overactive. A biopsy - tissue that is removed by a minor surgical procedure - may be examined under a microscope. Skin or kidney tissue examined in this way can show signs of an autoimmune disease.

What blood tests are used to diagnose lupus?

The blood tests used to diagnose lupus include:

Antinuclear antibody (ANA) test - An antinuclear antibody test is a sensitive screening tool used to detect autoimmune diseases, including lupus. Antinuclear antibodies (ANAs) are antibodies that are directed against certain structures within a cell's nucleus (thus, antinuclear antibody). ANAs are found in particular patterns in people with autoimmune diseases - those in which a person's immune system works against his or her own body. Around 95% of people with SLE have this antibody. However, the test may also be positive in many people who do not have lupus or who have another autoimmune disease.

Anti-DNA antibody test - Having the anti-DNA antibody means a person is very likely to have SLE, but people without the condition can still test positive for it. Anti-DNA antibody levels are often higher during a disease flare-up.

Complement level test - Complement is a test for a chemical associated with immune system activity, which may be a sign of SLE activity.

Lupus Prevention Tips 

  • Exercise. Low-impact exercises such as walking, swimming, and cycling can help prevent muscle wasting. Exercise also can have a positive impact on mood.
  • Get enough rest. Pace yourself, alternating periods of activity with periods of rest.
  • Eat well. People with lupus should eat a nutritious, well-balanced diet.
  • Avoid alcohol. Alcohol can interact with your medication to cause significant stomach or intestinal problems including ulcers.
  • Don't smoke. Smoking can impair circulation and worsen symptoms in people with lupus. Tobacco smoke also has negative effects on your heart, lungs, and stomach.
  • Play it safe in the sun. People with lupus may develop rashes or disease flare-ups when exposed to the sun. All patients with lupus should protect themselves from the sun: wear sunglasses, a hat, and sunscreen when you go out in the sun.
  • Treat fevers. Take care of fevers and infections promptly. A fever may indicate an infection or a lupus flare-up.
  • Be a partner in your care. Build an honest and open relationship with your doctor. Be patient. It often takes time to find the right medication, and dosage, that works best for you. Follow your doctor's treatment plan and don't be afraid to ask questions.
  • Get to know your disease. Keep a record of your symptoms, which parts of your body are affected, and any situations or activities that seem to trigger your symptoms.
  • Ask for help. Don't be afraid to recognise when you need help and to ask for it. Consider joining a support group. It often helps to talk to others who have been through similar experiences.

What treatments are available for Lupus? 

Lupus is generally treated using:

  • anti-inflammatory medicines like ibuprofen
  • hydroxychloroquine for fatigue and skin and joint problems
  • steroid tablets, injections and creams for kidney inflammation and rashes

Two newer 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. 

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