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Random Rants of a Lupie Lady
|Posted on November 28, 2012 at 8:30 PM|
I can talk all day about the devastation that Lupus can and has caused for so many people. I can because I know first hand.
Did you know that people with Lupus are often overlooked because "They don't look sick"! Many lupus patients suffer in silence because they are not believed to have a major, chronic, FATAL disease because of Lupus characteristics of invisibility. Over 1.6 mllion people worldwide suffer from the symptoms associated with Lupus and many still continue to lose their lives. Please don't wait until Lupus affects you personally to educate yourself and others. Join me in raising awareness. Below are 30 facts that you can share!
Fact 1 - Did you know that often times people with Lupus and other auto-immune diseases are often times juggling paying bills and buying medication? A high percentage of the diagnosed and undiagnosed are unable to work to support themselves and their invisible illness.
Fact 2 - Lupus can range from mild to life threatening, but must always be treated by a licensed health care professional as there is currently NO CURE for Lupus.
Fact 3 - Pain, fatigue, hopelessness, loneliness, depression, anxiety, fear. These are some of the symptoms that go along with having an auto-immune disease. Help me to inspires hope and healing by raising awareness regarding Lupus and other auto-immune related diseases.
Fact 4 - There are four different types of Lupus. One of which is: Systemic Lupus Erythematosus (SLE). Systemic lupus is usually more severe than cutaneous (skin) lupus, and can affect the skin, joints, and almost any organ in the body, including the lungs, kidneys, heart or brain. Approximately 70 percent of lupus cases are systemic. In about half of these cases, a major organ will be affected.
Fact 5 - There are four different types of Lupus. The second type is Cutaneous Lupus and/or Discoid Lupus which predominantly affects the skin. Cutaneous lupus is commonly caused by sun exposure and does not typically cause scarring. Discoid lupus causes scarring which is often times permanent or NOT reversible. Many with this type of Lupus are also affected by systemic Lupus (SLE) which can also affect the major organs in the body, although only a small number of patients are affected this way.
Fact 6 - There are four types of Lupus and the 3rd type is Neonatal Lupus. This type of Lupus is born to babies of mothers with Lupus. This is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect.
Fact 7 - There are four types of lupus and the fourth one is Medically Induced Lupus. This type of Lupus is cause by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.
The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.
Fact 8 - Here are some symptoms associated with Lupus.Symptoms vary from person to person, and may come and go. Almost everyone with SLE has joint pain and swelling. Some develop arthritis. Frequently affected joints are the fingers, hands, wrists, and knees.
Other common symptoms include:
Swollen Lymph nodes
Chest pain when taking a deep breath
Fever with no other cause
General discomfort, uneasiness, or ill feeling (malaise)
Sensitivity to sunlight
Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread.
Fact 9 - Here are some facts for you. Feel free to share, discuss, or ask questions.Lupus is an autoimmune disease that causes inflammation and tissue damage to the body.Lupus is a chronic disease, which means that you
will have lupus for the rest of your life.
Lupus is not contagious. You cannot “catch” it from someone or “give” it to someone.
Lupus is not like or related to cancer.
Lupus is not like or related to HIV or AIDS.
Lupus can cause a skin rashes or achy joints, or can affect organs inside the body.
Lupus is unpredictable. Symptoms can appear, disappear, and change.
Lupus can range from mild to life-threatening and should always be treated by a doctor.
Fact 10 - Because Lupus can affect any organ in the body, it may be necessary to be treated with more than one specialty.A Rhuematologist treats diseases of the joints and muscles.However, if your lupus causes kidney problems, you will also see a nephrologist, a specialist in diseases of the renal system.
If you have rashes or lesions, you will see a dermatologist, who specializes in diseases that affect the skin (including the scalp and the mouth).
Because lupus can cause damage to any part of the body, other specialists may be necessary, such as a cardiologist, who specializes in heart problems, or a neurologist, who specializes in problems that affect the brain and nervous system, or a perinatologist, who specializes in high-risk pregnancies.
Fact 11 - More symptoms associated with Lupus. Brain and nervous system: headaches, numbness, tingling, seizures, vision problems, personality changesDigestive tract: abdominal pain, nausea, and vomitingHeart: abnormal heart rhythms (arrhythmias)Lung: coughing up blood and difficulty breathingSkin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon)
Fact 12 - Because Lupus causes extreme pain and fatigue, it is important as caregivers and supporters to not be judgmental when dealing with loved ones with Lupus. Although in most cases, Lupus is NOT visible to the naked eye, symptoms are very real and can be devastating to patients. It is not all in our heads. We are not lazy. We are still very much human. We are simply coping, surviving, and have often forgotten how to LIVE in the process of surviving. Your love and understanding is essential. Helping to raise awareness shows support and is very appreciated!
Educating yourselves and others raises awareness!
Show your support!
Fact 13 - Lupus can cause cognitive disfunction. Patients with lupus often experience problems with such intellectual functions as remembering things, articulating thoughts, focusing attention to details, making decisions, or manipulating numbers. These impairments may range from mild thought disturbances to more severe confusional states. Even in their mildest forms they can be quite distressing to the patient experiencing them. They may not interfere significantly with the ability to function normally but still be a source of dissatisfaction in the individual’s work and social interactions. Because they are difficult to identify objectively, they can be very frustrating for family and friends, and even the treating physician, to deal with.
Fact 14 - Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Fact 15 - In order to get a clear diagnosis of Lupus there must be laboratory or physical evidence of the disease such as, swollen joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy that shows evidence of the disease.
Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.
The “Eleven Criteria”
Malar rash: butterfly-shaped rash across cheeks and nose
Discoid (skin) rash: raised red patches
Photosensitivity: skin rash as result of unusual reaction to sunlight
Mouth or nose ulcers: usually painless
Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
Neurologic disorder: seizures and/or psychosis
Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
Information pulled from the Lupus Research Institute.
Fact 16 - We live in the healthcare age so their are a lot of products on the market that claim to be safe, natural, and posses the ability to heal several illnesses. Having Lupus means that you have an immune system that is OVER-ACTIVE!!!!! Therefore, please be careful of all natural and holistic remedies that you suggest and/or take. Some contains ingredients that will BOOST the immune system and that is a NO-NO for someone with an already overly active immune system. Always take the advice of a licensed healthcare practitioner when making non-medical decisions about your care as some natural remedies, vitamins, etc. can also have a negative effect on the prescription meds that you take along with them. Please notify your healthcare providers of any prescribed and non-prescribed medications and/or supplements that you are taking.
Fact 17 - There is a common misconceptions that Lupus is a woman's disease. Although women between the ages of 15 and 45 account for 90% of diagnosis, Lupus can and does effect men, women, and children of any age. Men usually have a more severe case of the disease and a higher rate of the following issues:
Pluerisy, Renal disease, Renal failure, seizures, Discoid Lupus including subacute cutaneous Lupus, Thrombocytopenia, Hemolytic Anemia, and Lupus anticoagulant which causes abnormal clotting of the blood.
Fact 18 - Many Lupus patients suffer with chest pain upon deep breathing. This is caused by inflammation of the lining of the chest cavity. This occurrence is called Pluerisy. Patients who experience chest pain should notify their doctor to determine if the pain is indeed Pluerisy as it could lead to other complications including difficulty breathing and even a collapsed lung.
Fact 19 - Lupus can also cause an increased risk of blood issues including anemia, low blood count; thrombosis, clotting issues; or vasculities, inflammation of the blood vessel walls. Because of these issues, tissue, cell, organ, and even bone death can occur. A doctor called a hemotologist is a doctor who specializes in disorders of the blood.
Fact 20 - As mentioned in the previous fact, many Lupus patients deal with a complication called vasculitis which is inflammation of the blood vessels. As a result of this inflammation, improper blood flow through the blood vessels can lead to inadequate flow to the bones causing avascular necrosis. This improper blood flow can also weaken the blood vessel walls causing bulging which leads to rupture or anuerysms. Regular assessment by a licensed medical practitioner and blood testing is essential for detecting some of the complications of Lupus.
Fact 21 - A common treatment for Lupus is steroids, or Predisone. Common side effects are: Difficulty controlling emotions, mood swings, increased appetite, weight gain, difficulty maintaining train of thought and psychological symptoms including depression, mania, and psychosis, unusual fatigue and weakness, mental confusion or indecisiveness, blurred vision, abdominal pain including peptic ulcer, painful hips and shoulders, and infections. These are only some of the major side effects associated with steroid treatment. Please be sure to discuss these symptoms with a licensed health care provider.
Fact 22 - Isolation and depression are common amongst people with Lupus. Feeling sick and tired of being "sick" and "tired" is a common feeling. Many feel like no one will ever know how they are really feeling or ever understand that they look fine and feel like death itself. That being said. It is very important to be extremely gentle and supportive of those that we know with Lupus and other auto-immune diseases. Make sure you are there for them...whether you believe them or not...because many don't feel believed, and are often stuck in between an actual diagnosis. Always remember, they are still human...and have the same wants needs dreams and desires as you do. We are sick....but certainly NOT DEAD!
Fact 23 - Did you know that there are several celebrities that are also suffering with Lupus. Toni Braxton has Lupus along with Snoop Dogg's daughter, and Tichina Arnold's sister. Nick Cannon suffers with Lupus Nephritis which directly affects the kidneys and Seal has Discoid Lupus that directly affects the skin and is the reason for the scarring on his face. Rapper Trick Daddy also has discoid Lupus.
Fact 24 - Children can and are also affected by Lupus. Lupus in children is the same disease as Lupus in adults, but usually children have been ill for a much longer period before the diagnosis is made. Because they have been ill longer before a diagnosis is made, they typically have to start a much more aggressive form of treatment as they may have significant organ involvement.
Fact 25 - Although treatment for Lupus may vary among patients, the goal of treatment is to minimize the symptoms as there is currently NO CURE for Lupus or any other auto-immune disease. Treatment is based on the severity of the disease. Common treatments include, but are not limited too, non steroidal anti-inflammatory drugs (NSAIDS), Antimalarials, Corticosteroids, Immune suppresants including Cytoxans, and chemotherapies. Along with these treatments comes risks and side effects. Therefore, benefits and risks must be weighed and discussed with your doctor.
Fact 26 - Although there are no clear studies to prove that Lupus is hereditary, there has been studies to suggest that various auto-immune diseases can be found in the same family due to a person being more susceptible as opposed to predisposed to auto-immune disease. There are more than 80 different auto-immune diseases including insulin dependent diabetes. In my personal family is:
1. Rhuematoid Arthritis - bone involvement
2. Sarcoidoses - Lung involvement
3. Polymiositis - Muscle involvement (heart is a muscle)
4. Sjogren's Syndrome - (salivary and moisture producing glands)
5. Reynaud's Phenomenon - poor circulation
6. Idiopathic Thrombocytopenia Purpura (ITP) - affects the blood platelets
7. Lupus (SLE) - systemic lupus affects the entire body
8. Hashimoto's diseases - thyroid involvement
Fact 27 - Auto-immune diseases are diseases in which the immune system malfuctions. The immune system is your personal army in your body that keeps foreign invaders (sickness and disease) from overtaking your land (your body). Auto-immune diseases are when the army does not recognize it's own soil or territory. Firing friendly fire to anything that moves. Because of this, the land is overcome by this friendly fire and large territories can be loss. Does this explanation help you to understand auto-immune diseases? There are over 80 listed diseases classified as auto-immune including Lupus. Learn them and their symptoms so that you can be aware.
Fact 28 - Although there is NO Cure for Lupus and other Auto-Immune diseases, there have been great strides in the treatment of symptoms for them. Many are living longer lives and are able to put their diseases into remission with early diagnosis. Many go on to lead productive lives and are living their dreams. Don't be afraid to challenge your medical team to get a clear diagnosis if your are suffering with unexplained symptoms of any kind. Do your research and ask questions. Write your questions down BEFORE you get in the doctor's office. Keep a diary or log of symptoms and their duration so that you can give your physician a clearer picture of what is going on. It may take time, but you will be one step closer to helping yourself and them to get a better understanding of how these diseases operate.
Fact 29 - Two thirds of patients with lupus are extremely sensitive to ultra violet rays either from the sun or from inside florescent lighting. Whether you are sensitive or not, you should be sure to protect yourself from UVA and UVB rays. When going outside you should be sure to protect your skin with a sunblock of at least a SPF of 30 or greater. Make sure to hit areas that are more sensitive to the sun like the nose, neck, cheeks and ears. Wear a wide brimmed hat and long sleeves if necessary. Remember that UVB rays are highest between 10am and 4pm. Also remember that rays are higher at higher altitudes and can even be reflected off of snow and water. For those sensitive to indoor lighting, be careful of the lighting in stores and offices. You can purchase light shields for bulbs but be sure to get shields with a Nanometer of 380 to 400. This will protect from UVB and UVC rays which are particular damaging to skin cells.
Fact 30 - I want to remind you that Lupus is a very REAL disease that continues to take lives. I personally am living with Systemic Lupus Erythematosus (SLE), Sjogren's Syndrome, Fibromyalgia, Reynaud's, Billiary Cirrhosis of the Liver, Restrictive Lung Disease, and a rare Non-Hodgkins Lymphoma (cancer) and a host of other co-morbidities. I live a life of chronic pain and fatigue.I am NOT telling you this for you to pity me, or to evoke tears and sorrow. I am telling you so that you know WHY I choose to raise awareness about auto-immune diseases like Lupus. As you can see...it DIRECTLY affects me and those that love me. It is important to me that despite all the things listed here, that you all understand how important it is for people to understand that I am NOT just alive. I am living. As a living human being, I have DREAMS, GOALS, and ASPIRATIONS. My goal is to encourage everyone breathing to LIVE your dreams no matter what might be a speed bump is this game called life. Yes it is EXTREMELY painful to play the violin. But as long as I am breathing, my dream is to use that piece of wood as a voice to ASPIRE to INSPIRE before I EXPIRE!
* Although some of the facts listed here are very personal, the majority of the facts listed here were taken from The Lupus Foundation of America's website at www.lupus.org