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If you guessed the diagnosis correctly then good job! If you didn’t, do not be discouraged because lupus is a very hard condition to diagnose, even for the best of doctors. Lupus is a condition that often mimics or imitates the symptoms of many other diseases, therefore making it hard to diagnose. This is how it got the nickname “The Great Imitator”.
Lupus is a chronic inflammatory autoimmune disease (you will learn what these means as you scroll farther down) that affects around 1.5 million Americans every year and affects about 5 million people around the world. About 90% of these people with lupus are women, especially around the child-bearing ages of 15-44. This does not mean that it does not affect men, it just means that it is way more common in women. People of all races could develop lupus but it seems that women of color are two to three times more likely to get it than Caucasian women. No one really knows why lupus affects these groups of people more but we are working to find this out.
My aunt was diagnosed with lupus a few years back and has been living with it ever since. I am very close with my aunt, one reason being that she, my uncle, and two cousins live 3 minutes away from us and are the only family we have living nearby. I spend a lot of time with them and they are basically like my 2nd parens. I have seen personally how my aunt has been affected by lupus and basically has to live with this for the rest of her life because there is no real cure. Lupus has affected my aunt and her family tremendously, causing many problems and requiring many changes in her lifestyle. She was almost put into a life and death situation because of it. With this disease she sometimes has good/normal days and sometimes has very bad and tiresome days
My objective here is for you to become aware of lupus because it is not a very well known or understood condition. I want you to learn what it is like to have lupus and understand what some people around you may be going through. The lack of awareness about lupus greatly affects those who develop this condition and their family. It makes them feel more scared and alone in the situation because no one really understands what it is they are going through. Then their family doesn’t know how to help them because they don’t know much about the condition. I would also encourage you to volunteer at lupus organizations and donate for research because there is a lot of research to be done for lupus. Lupus is really hard to diagnose and has no real cure so doctors and scientists need the money for research in order to fix this.
Now Try This Card Game To See How Much You Know About Lupus
Interview with Aunt who has had Lupus for a few years now:
What is lupus?
“It is an autoimmune disease, so instead of your immune system protecting you from diseases, it attacks your own body. It can affect many different part of your body like your joints, kidneys, brain, and more. Basically, your antibodies attack your own body. There are also different types of lupus. The type of lupus I have is called systemic lupus, but I don’t remember what the other ones are.”
Does anybody else in your family have lupus that you know of?
“No, but my mom has rheumatoid arthritis which is very similar to lupus. Both diseases are a type of autoimmune disease and a lot of times they get confused with each other.”
What type of symptoms did you have that led you to find out you had lupus?
“I had a lot of tiredness, fatigue, and joint pains. I would get a good amount of sleep every night but still wake up exhausted. My symptoms would activate at any moment and when they did, I had to take it easy. I also had a rash on my face.”
When you went to the doctor, what did they do to determine what was going on with you?
“This was actually weird because I had a rash on my face and a common symptom of lupus is a butterfly rash on your face. However my rash a little different, it did not look like that. So when I went to go see the team of doctors at my work and he saw my face, he said ‘I think you have lupus.’ They then did a biopsy of my skin and checked my antibody levels to determine that I had lupus.”
How often do you feel tired or weak?
“Well, I feel tired all the time because I am a working mother. However, it is a different type of tired. Usually when it is really sunny, I feel really tired and fatigued. The weather can activate your lupus, so when you are exposed to the sun on a sunny day, it takes away my energy. The same thing goes for the winter because I get a lot of joint pains.”
What type of lifestyle changes have you had to make b/c of this condition?
“Well, I really have to watch what I eat, I try not to have a lot of sugar. I try and eat a lot of vegetables I also drink vegetable juices every morning which really helps. I exercise because it helps with joint stiffness caused by the lupus which is similar to what people with arthritis experience. Also I have to listen to my body. If I am tired, then I need to rest. I can’t just keep going and going, I have to listen to my body. I also have to watch my weight, the more I gain, the worse I feel. I also take a lot of vitamins.”
What major problems has lupus caused for you?
“I have had kidney failure. I lost my kidneys after having my baby and my husband had to give me one of his kidneys. They don’t recommend people with lupus to have a baby because of the complications that people with lupus have and your baby is at higher risk of a birth defect. However, my lupus was fine in the beginning of my pregnancy. It was towards the end of my pregnancy where it got really bad so I to take dialysis and get a kidney transplant. My baby ended up being born 7 months premature and with 3 kidneys but he is 5 now and perfectly healthy. I also had to take chemotherapy at one point because my lupus was getting very bad. They did chemo throughout my body to kill a lot of the cells that were producing those antibodies that were attacking my body. They were trying to calm down my lupus.”
What type of medicines do you have to take to help with your lupus?
“I have to take a lot of medication. Most of the medications I take are to regulate my immune system. Right now I take tacrolimus for my kidneys, Enalapril Maleate for my blood pressure, Hydroxychloroquine, and Azathioprine. All of these medications work to sort of suppress my immune system.”
How is lupus treated?
“There are many ways to treat lupus but there is no real cure yet. I take the pills that I told you about but there are others, it just depends on the person. I also take things like fish oil and flax seeds because they help with inflammation since they have omega. This is like an alternative medication. I have also done acupuncture before. I have also done chemotherapy like I already mentioned.”
Does lupus affect everyone the same?
“No, because first of all, there are different types of lupus. Also different people experience different problems with it. Some people have kidney problems, some people have heart problems, for some people there brain is affected, etc. It really just depends on the person.”
What have you learned from this experience?
“I have learned that I have to listen to my body and take care of it. I have to eat healthy and rest more and if I notice something in my body, I have to visit the doctor right away, without waiting. I have also learned to appreciate life and family. You can have all the money that you want and a lot of material things but nothing is worth it if you don’t have a good health.”
Watch this video of Nick Cannon on having Lupus:
This is a nice documentary by Steven Roberge to help understand lupus:
Biochemical Marker Research for Lupus:
- One big thing in research that they have spent millions of dollars on are
- biochemical markers (proteins, enzymes, and other molecules) that could provide warning signs for lupus flares. These would allow for us to avoid these flares and damage to major organs. These biomarkers could also help us study and evaluate the effects of certain treatments and create better treatments.
Read more about this here:
Ask me any questions you have about Lupus here:
Bringing & Sparking Change
Now hopefully you have gotten a better understanding of what lupus is and what it is like to go through lupus. Lupus is a difficult disease that many people have to go through. The worst part of it is that this is something they are stuck with for the rest of their lives because there is no cure for this condition. Not only is there no cure but it is very difficult to diagnose due to the fact that it imitates other diseases. There is no one test that can tell doctors whether you have lupus and most of the time a person needs to have 4 of the “11 criteria of diagnosis” to be diagnosed with lupus. Late diagnosis can lead to organ damage in one or multiple organs because of the fact that this is an autoimmune disease that attacks the body’s tissues and organs. Now that you are more aware of the disease I would encourage you to donate to research for lupus where they are working to find a cure and better diagnostic tools. Donations are not the only area you could help in, you could also help by volunteering in lupus organizations. You could also just help those around you who are going through this condition now that you are more aware.
Go here to donate to lupus research: http://www.lupus.org/action/join-the-fight
THANK YOU!!!!!! 😀