Butterflies of Hope Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!
May 31 Lupus Fact
Lupus Awareness Month Recap!
Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You have changed that! By helping Lupus In Color raise awareness of lupus and showing support for those who battle its brutal impact.
Some facts we have shared about lupus through Butterflies of Hope Flight of the Butterflies…
• Lupus is a chronic and complex autoimmune disease, lupus can affect the joints, skin, brain, lungs, kidneys, and blood vessels, causing widespread inflammation and tissue damage in the affected organ.
• Anyone can get lupus, but it most often affects women. Lupus is also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.
• An estimated 16,000 people develop lupus each year but Lupus awareness is lacking.
• Lupus is more prevalent than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Lupus affects 1 out of every 185 Americans.
• THE MOST COMMON SYMPTOMS OF LUPUS ARE: EXTREME FATIGUE (TIREDNESS), HEADACHES, PAINFUL OR SWOLLEN JOINTS, FEVER, ANEMIA (LOW NUMBERS OF RED BLOOD CELLS OR HEMOGLOBIN, OR LOW TOTAL BLOOD VOLUME), SWELLING (EDEMA) IN FEET, LEGS, HANDS, AND/OR AROUND EYES, PAIN IN CHEST ON DEEP BREATHING (PLEURISY), BUTTERFLY-SHAPED RASH ACROSS CHEEKS AND NOSE, SUN- OR LIGHT-SENSITIVITY (PHOTOSENSITIVE), HAIR LOSS, ABNORMAL BLOOD CLOTTING, FINGERS TURNING WHITE AND/OR BLUE WHEN COLD (RAYNAUD’S PHENOMENON),MOUTH OR NOSE ULCERS
• The history of lupus begins in 1828 when the French dermatologist, Biett described the disease. For the next 45 years, studies of the disease showed nothing more than descriptions that emphasized skin changes. In the mid 1800’s, Pierre Cazenave was the first person to have a comprehensive description of lupus. The disease was named because of a wolf-bite shaped rash (the butterfly rash) that appears across the nose and cheeks of many lupus patients. “Lupus” is the Latin word for wolf.
• Research suggests 4-22% of those with lupus are male. Men develop the same typical clinical manifestations of lupus as women, yet certain key symptoms may be different. Kidney and skin involvement, for example, may be more common among men with lupus.
• Lupus can be difficult to diagnose as the symptoms come and go and mimic many other illnesses. It can take 3-5 years for a firm lupus diagnosis. Lupus is NOT AIDS. Lupus is NOT cancerous, NOT contagious or rare.
• It took 50 years to create a drug that targets lupus specifically. The IV-administered drug belimumab, known as Benlysta, approved by Food and Drug Administration (FDA) in March 2011, is the newest lupus treatment. It works by suppressing overactive immune-system components known as B-cells.
• Lupus is a disease of flares and periods of quiescence (quieting). Lupus flare-ups can be mild, or they can be severe. At least 75% of people with lupus have arthritis and skin rashes. Half have kidney problems. Cardiovascular issues can occur more in people with lupus and this with lupus are also more vulnerable to infection than most people.
• May 10 is World Lupus Day. A day to help us celebrate warriors and spread awareness. World Lupus Day was created to help all to understand that this seemingly random grab bag of symptoms is actually a life altering, debilitating, chronic autoimmune disease suffered by approximately 5 million people worldwide, with 1.5 million of them living in the United States alone.
• About 50 percent of people with lupus have antiphospholipid antibodies. Antiphospholipid antibodies interfere with the normal function of blood vessels and can lead to narrowing of the blood vessels or blood clots. These complications can lead to stroke, heart attack, and miscarriage.
• Hair loss due to systemic lupus is known as “telogen effluvium” and is basically due to the insult of being very ill. Hair loss tends to be diffuse, however, it may be most pronounced around the front areas of the scalp. Patchy hair loss can also be the result of a flare-up in lupus disease activity. Hair typically grows back when lupus is well controlled or in a quiescence.
• Raynaud’s syndrome is a condition that affects circulation, causing decreased blood flow to the extremities (most commonly the fingers and toes). This can be triggered by several things, including cold weather and stress. Often the person’s fingers or toes will change colors due to the lack of blood flow, causing them to go white, red, blue or purple. Studies estimate that Raynaud’s occurs in up to one-third of people with lupus, usually resulting from inflammation of nerves or blood vessels.
• Living with a chronic illness like lupus can be incredibly challenging and taxing. Not just on your physical health, but on your mental and emotional health, too. It’s normal for a lupus warrior to struggle with feelings of grief, frustration, sadness or hopelessness after being diagnosed with a lifelong condition. Lupus can be unpredictable and its effects far-reaching, so when these feelings persist and a lupus warrior finds themselves struggling with anxiety or depression, they have to find ways to alleviate those feeling to know they are not alone in their fight. Many lupus warriors seek help in support groups, group and personal therapy as well as finding solace in sharing their stories with others.
• Photosensitivity, also known as sensitivity to sunlight, is a common symptom of lupus, as 40 to 70 percent of people find that ultraviolet (UV) rays worsen their symptoms and cause flare-ups. Photosensitivity can affect people with both cutaneous and systemic lupus, causing symptoms such as rashes, fever, fatigue and joint pain.
• There are 4 different forms of lupus, Systemic lupus, Cutaneous lupus, Drug-induced lupus & Neonatal lupus
• “Lupus headache” refers to a specific type of headache that occurs with Lupus warriors where the disease is active and there is actual inflammation around the brain that causes discomfort and headaches.
• Lupus Fatigue is real and over 80% of those with lupus experience fatigue. Complete exhaustion, for those affected by Lupus becomes a permanent part of life. Flare-related fatigue is a most difficult exhaustion. An unpredictable state of increased fatigue during increased inflammation and pain can last for days or weeks. Fatigue is one of the things that is hardest to combat.
• Because lupus can affect so many different organs, a wide range of signs and symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease. Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve.
• THE DIRECT COSTS OF TREATING LUPUS CAN BE ENORMOUS. THE MEAN DIRECT MEDICAL COSTS IN MODERATE OR SEVERE CASE OF LUPUS IS APPROXIMATELY $22,300-83,000. THOSE WITH A MILDER CASE OF LUPUS IS APPROXIMATELY $8,900-15,000. PEOPLE WITH LUPUS ALSO FACE HIGH ANNUAL PHARMACY EXPENSES, WITH MEAN COSTS RANGING BETWEEN $1,572-13,138.
• Chilblain lupus is a cutaneous form of systemic lupus erythematosus characterized by the appearance of painful bluish-red papular or nodular lesions of the skin in acral locations (including the dorsal aspects of fingers and toes, heels, nose, cheeks, ears, and, in some cases, knees) precipitated by cold and wet exposure.
• Lupus can affect the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).
• Lupus nephritis is a type of kidney disease caused by systemic lupus erythematosus. Kidney damage is one of the more common health problems caused by lupus. In adults who have lupus, as many as 5 out of 10 can have kidney disease. In children who have lupus, 8 of 10 can have kidney disease.
• Lupus raises your chances of heart disease and stroke. Lupus causes inflammation of the heart or the sac that surrounds it. Lupus can cause inflammation of the myocardium, the muscle tissue of your heart.
• An extremely difficult diagnosis such as lupus can put you into so many emotional phases. Finding coping methods is crucial to keeping a happy life after being diagnosed with lupus. Some of the very first feelings include frustration, sadness, anxiety, and fear of what’s to come.
• LUPUS IS A DISEASE OF FLARES BUT EVERY LUPUS WARRIOR MAY NOT HAVE THE SAME TRIGGERS. A HEALTHY LIFESTYLE REDUCES LUPUS FLARES AND EVERY LUPUS WARRIOR’S FLARES ARE NOT THE SAME.
• The butterfly is the symbol for lupus. Although it is a beautiful symbol, the disease itself is very difficult to live with. The butterfly became the symbol because of the malar rash that presents itself on the faces of lupus warriors. It is called the lupus butterfly rash because of its butterfly-like shape on the bridge of the nose and cheekbones. These rashes are usually red or purple in color in either a blotchy pattern or completely red over the affected area, and can be flat or raised in nature.
• Having lupus can make everyday life challenging. When lupus is active, symptoms like joint stiffness, pain, fatigue, confusion, or depression can make simple tasks difficult and sometimes impossible. Since these symptoms aren’t visible, the people around a lupus warrior may have trouble understanding how they feel.
• Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself.These cognitive problems are often worse during flares.
• Sometimes lupus can affect men a little differently than women. Symptoms more common in men but also present in women: Pleurisy (inflammation of the sac around the lungs)•Renal (kidney) disease•Discoid lupus (reddish, scaly skin)•Hemolytic anemia (from the destruction of red blood cells)•Lupus anticoagulant (can promote abnormal blood clotting)•Seizures
Thank you for spreading lupus awareness with Lupus In Color. Please continue to get the word out about lupus. Support a warrior, gain and share understanding beyond lupus awareness month.
This is your thirty-first butterfly of hope.
We need awareness and a cure!
Encourage everyone you know to let it FLY!
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