WHAT DO I NEED TO KNOW ABOUT LUPUS?
If you have been diagnosed with lupus, you will want to know as much as you can about the disease. Below, you can read: "What is Lupus?", "What Causes Lupus?", "Forms of Lupus", "What are the Symptoms of Lupus?", "What Kind of Doctors Treat Lupus?", and "Facts About Lupus".
The following links may be of interest to you if you are looking for answers about lupus:
- Ask the Experts
Submit a question to our panel of nationally-renowned lupus medical experts.
- Upcoming Webchats
The Lupus Foundation of America is proud to present live moderated chats, featuring the nation's leading experts in lupus. Check out the schedule of speakers & topics.
- Transcripts of Previous LFA's WebchatsLupus Now magazine
The Lupus Foundation of America archives all previous webchats so that you can read them at any time. The webchats cover a myriad of subjects important to those who live with lupus including topics such as Lupus and the Kidneys, Lupus and Cardiovascular Disease, etc.
Take a look at the latest online issue of LFA's award-winning magazine.
- Transcripts of Previous LFA's Webchats
- On the Road to a Cure - the LFA's blog
Updated a few times a week, On the Road to a Cure provides a more conversational take on things happening for the Lupus Foundation of America and in the lupus world at large.
WHAT IS LUPUS?
Lupus is a chronic, autoimmune disease that can cause damage to any part of the body (skin, joints and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from foreign substances, like bacteria and viruses. With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates autoantibodies ("auto" means "self") to attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can be mild or serious but should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
WHAT CAUSES LUPUS?
No one knows what causes lupus. However, scientists believe that hormones, genetics (heredity), and environment are all involved.
Hormones regulate many of the body’s functions. In particular, the sex hormone estrogen plays a role in lupus. Men and women both produce estrogen, but estrogen production is much greater in females. However, it does not mean that estrogen, or any other hormone for that matter, causes lupus.
While no gene or group of genes has been proven to cause lupus, the disease does appear in certain families. And, although lupus can develop in people with no lupus in their family history, there are likely to be other autoimmune diseases in some family members. Certain ethnic groups (people of African, Asian, Hispanic/Latino, American Indian, or Pacific Island descent) have a greater risk of developing lupus, which may also be related to genes they have in common.
Your genes may increase the chance that you will develop lupus, but scientists believe it takes some kind of environmental trigger to set off the illness or to bring on a flare, such as:
- ultraviolet rays from the sun or from fluorescent light bulbs
- sulfa drugs, which make a person more sensitive to the sun
- penicillin or certain other antibiotic drugs
- some tetracycline drugs
- a cold or a viral illness
- emotional stress
- anything that causes stress to the body, like surgery, an accident, or pregnancy
Other seemingly unrelated factors can trigger your onset of lupus. Scientists have noted some common triggers among many people who have lupus, including exposure to the sun, an infection, a medication taken to treat an illness, being pregnant, and giving birth.
FORMS OF LUPUS
There are several forms of lupus.
Systemic lupus erythematosus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can affect any part of your body, and can be mild or severe. Some of the more serious complications involving major organ systems are:
- inflammation of the kidneys (lupus nephritis)
- an increase in blood pressure in the lungs (pulmonary hypertension)
- inflammation of the heart muscle (myocarditis)
- hardening of the arteries (coronary artery disease)
- inflammation of the central nervous system (CNS) and brain
- inflammation of the brain’s blood vessels
Cutaneous lupus erythematosus is limited to your skin. Although cutaneous lupus can cause many types of rashes and lesions (sores), the most common kind is raised, scaly and red, but not itchy; it is called a discoid rash because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is the rash on the cheeks and across the bridge of the nose, known as the butterfly rash. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.
Certain prescription drugs can create a lupus-like disease, called drug-induced lupus. 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 (a drug used to treat tuberculosis). The lupus-like symptoms usually disappear within six months after the medications are stopped.
Neonatal lupus is a rare condition that affects babies of women who have lupus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but all of these symptoms go away completely after several months with no lasting effects. A very small percentage of babies with neonatal lupus may also have a serious heart defect; however, most babies of mothers with lupus are entirely healthy.
WHAT ARE THE SYMPTOMS OF LUPUS?
Because lupus can affect so many different organs, there is wide range of symptoms that can occur. The most common symptoms of lupus, which are the same for females and males, are:
- extreme fatigue (tiredness)
- painful or swollen joints
- anemia (caused by low numbers of red blood cells or hemoglobin, or low total blood volume)
- swelling (edema) in feet, legs, or around eyes
- Pain in the chest on deep breathing (pleurisy)
- Butterfly-shaped rash across the cheeks and nose
- Sun- or light-sensitivity (photosensitivity)
- Hair loss
- Blood-clotting problems
- Fingers turning white and/or blue in the cold (Raynaud’s phenomenon)
- Ulcers in mouth or nose
WHAT KIND OF DOCTORS TREAT LUPUS?
Most people with lupus will be treated by a rheumatologist, who is a specialist in the diseases of joints and muscles. However, if you have rashes or lesions from cutaneous lupus you will see a dermatologist, a specialist 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 nephrologist, who specializes in kidney problems; a cardiologist, who specializes in heart problems; a neurologist, who specializes in problems that affect the brain and nervous system; or an perinatologist, who specializes in high-risk pregnancies.
FACTS ABOUT LUPUS
- Lupus is not contagious.
- Lupus is not like or related to cancer.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome).
- In the United States alone it is believed that at least 1.5 million people -- women, men, teens, and children -- have lupus. More than 16,000 new cases are reported across the country each year.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children and teenagers develop lupus, too.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
FACES OF LUPUS - ALASKANS LIVING WITH LUPUS
Please read these inspiring stories of Alaskans living with lupus. If you would like to submit your own story, please email a personal photo and your story to email@example.com.
My interest in lupus began when my Grandmother was diagnosed in early 2010. I am a single mother of two (2) boys and we are a four generation household with Grandma, my Mom, myself and the kids all under one roof so lupus affects us all at times. Knowing more and helping get the word out, I think is important. That is why I joined the Lupus Board of Directors.
I am a fourth (4th) generation Alaskan and have lived in Anchorage most of my life with some years spent in Kenai. As a child, I would spend my summers in Port Alsworth. I have spent most of my working life in the food and beverage industry and am currently servicing tables at a local diner with the intention to go back to school in the fall.
I’m one of the Lucky Ones….
I was 51 years old, too old to be diagnosed with Lupus, if I had even known what Lupus was. I had been to Florida, in February, for a convention. We were driving in a convertible that they didn’t charge extra for, because the agency was out of other cars. I worked in my mother-in-laws flower garden. It was HOT in the sunshine. As we flew back to Anchorage, I remember being overly exhausted.
Later that summer we visited our parents in the mid-west. There was a lot of yard work to be done. It was hot in the sunshine. I had sun screen on my face and arms but not on my throat. I developed round, red, scaly circles on my neck. Back home, I went to a dermatologist. “It’s Lupus” the doctor said, “I don’t even need to test it”.
I’m one of the lucky ones; I was diagnosed in one day when even in this day and age, it often takes up to 4 years to get a diagnosis. I have not developed heart, lung , or kidney involvement, just the usual frustrating symptoms. I was meant to work for people with Lupus who need to know “they are not alone”, as our Executive Director Anna likes to remind us. Like I said, I was one of the lucky ones.
For over 20 years my life was plagued with strange symptoms and no answers from the medical community. I decided to just live with them. Then the symptoms exploded. I couldn’t breathe, couldn’t move without great difficulty, my kidneys began to shut down and the memory loss was getting worse and worse. After a long year of feeling like the doctors thought it was all in my head or they just shrugged their shoulders in a not knowing manner, I was finally was diagnosed with lupus. I was happy to have a diagnosis even though I had no idea what the disease was. Luckily I was directed to a doctor who had a lot of knowledge about lupus and after six months of heavy drug treatments, the disease was finally slowed and held at bay. Because of the length of time it took to get a diagnosis, I ended up with a lot of scar tissue and permanent damage to some of my organs. Now almost 20 years later, I have moved on with lupus as my constant companion. I am always aware of it but am refusing to let it take over my whole life. I have to medications that I would rather not take but they give me the ability to enjoy my life with my family. Lupus has let me meet many new friends and to share my hope with them.
I was 6 months pregnant with my second daughter when the first doctor, an obstetrician, told me that she was positive I had lupus. I remember going home and just sobbing. I had a friend whose mother has lupus and I remember watching her suffer in pain to get through every day - I remember watching her turn grey and lose weight, lose her hair, and throw up. I didn't want this. I refused to believe I had lupus.
After my daughter was born I was beyond exhausted. Not only did she have health problems but I also had a 19 month old daughter to care for as well. I was a stay-at-home mom and at that point my youngest daughter was not healthy enough to even think of daycare. I noticed my hair falling out, mysterious rashes and fevers, and bone aches in my legs. I lost 25 lbs like it was nothing.
Another doctor told me she believed I had lupus, but she wanted me to see a rheumatologist to be further evaluated. The wait for the rheumatologist was very long, about 4 months, and I continued to deteriorate during the wait. When I finally saw the specialist, the doctor told my husband and I that I had Systemic Lupus and that it was quite severe. I was told that I would be taking a slew of medications for the rest of my life, including chemotherapy to suppress my overactive immune system. She also started me on steroids for joint and bone pains and my rashes - the steroids were awful - they made me feel out of my mind and like I was a different, angrier person. The doctor explained that I also had a mutation known as the Anti-Sm that would lead to eventual kidney failure which would eventually encompass dialysis, transplant, or death.
All of this information was too much to take - I was so overwhelmed with the fact I was facing kidney failure from this disease within the next 10 years I couldn't think of much else. I stared at the pictures of my children for hours and thought that my youngest daughter would only be 10 when I died.... However, I refused to sit here and die without a fight and I refused to accept that I would be taking all those horrible, serious drugs the rest of my life. I decided to get another opinion from a specialist and was told that my lupus was mild and that I did not need to take chemotherapy.
I was very confused and frustrated at all the conflicting information I was getting. Finally, I found a doctor who would listen to me and give me the information that I needed to stay as healthy as possible. My view on life today is to take it one day at a time. I have come to accept that I will never feel "normal" or have a day without some type of pain or fatigue. I am learning to live with that and I try to power through every day for the sake of my family and the people around me. I don't want my kids to grow up with the idea that mommy is always sick. I want to try to make everything as normal for them as I can.
I hope that in my life time we can at least find a way to reduce the pains and symptoms of lupus, even if we cannot cure it. I hope that each and every one of us with lupus can live a long, productive, and fulfilling life, and it all starts with us coming together to support each other and to research our illness.
I have been living with lupus for 40 years. Lupus is a complicated disease of the immune system that can cause damage to any tissue or organ in the body. On average, it takes 1 - 4 years and visits to 3 doctors for patients to be correctly diagnosed with lupus. However, it took over 26 years and a multitude of doctors before I received a diagnosis of lupus. If left undiagnosed, the consequences of lupus can be devastating, leading to heart attacks, strokes, seizures, miscarriages, and organ failure. I experienced several of these consequences.
This is my story: At seventeen, I had a horrible rash everywhere on my body. The doctor said it was an allergic reaction. At twenty, I started having transient strokes that caused temporary loss in my visual field. The doctor said to quit taking birth control pills. In my twenties, I also had several miscarriages. In my thirties, I often felt fatigued and was hospitalized for 4 days for high fevers of unknown origin. The doctors couldn’t find anything wrong with me. Finally, at age 43, I went to my doctor and complained again of severe fatigue. He asked me if I was depressed (which I wasn’t) and said to come back in a month if I was still feeling fatigued. A month later, I finally got a diagnosis. It was a relief to finally know what had been causing all of my medical problems.
Living with any chronic and potentially life-threatening illness is a challenge. People with lupus often have to quit working because of the overwhelming fatigue combined with the unpredictable nature of the illness. After 25 years as a dental hygienist, I had to give up my work and my wonderful patients. Lupus also makes it difficult to pursue my love of gardening since being in the sun causes flare-ups of the disease. Although lupus has taken several things from me, it has also inspired me to be a better person. I volunteer for the Lupus Foundation of America Alaska Chapter and Big Brothers Big Sisters. I also serve on two national LFA committees in order to help make a difference in the lives of people with lupus. My life is very rewarding and I feel truly blessed to have a wonderful family and great friends to support me.
A LETTER FROM JULIAN LENNON