May 1st is the start of the Lupus Awareness Month. Lupus is an autoimmune disorder where your own antibodies and immune system attack your own healthy body tissues, such as skin, joints, organs, and the like. With the help of the Facebook support group A Loving World of Lupies- A Lupus Community For All, of which I am a member, I compiled a list of 13 things that you should know about Lupus.
1. There are an estimated 1.5 Million People with Lupus in the United States.
2. According to the CDC, there are 10 females to every male that is diagnosed. Of those women, a vast majority are of African decent.
3. One of the most dominate characteristics of Lupus is the butterfly rash on the face. Other symptoms include chronic fatigue, joint pain, and hair loss.
4. Many Lupus patients go to several different doctors and go undiagnosed for years. In my case, I noticed the rashes when I was in 6th grade and was not diagnosed until the end of my senior year in high school. Others in my support group spent 10 years or more searching for a diagnosis.
5. Symptoms come in flares. We may be fine one day and unable to move the next. When we say we are too sick, we are not avoiding you, we truly are sick.
6. Lupus can cause complications in a pregnancy, so people with Lupus have to plan out pregnancies with their doctor very carefully.
7. We may not look sick all the time, but telling us we do not look sick upsets us. Just because we have Lupus does not mean we are sick. Most of our symptoms are not external so even though you may not see them, they still exist.
8. According to the CDC, the average person with Lupus takes between 7 and 9 medications. Many of those medications require multiple pills. It is not uncommon to see a pill case like the one below.
9. Lupus is NOT contagious. While it may be inherited by our children, it is impossible for you to catch from someone. So please do not be afraid to comfort and hug us like you would anyone else.
10. Lupus has no cure. We will live with lupus for the rest of our lives.
11. Lupus imitates many other symptoms and illnesses, which is why it is so hard to be diagnosed and to find a cure. Doctors have to create a plan of action for each individual Lupus patient.
12. There is no specific test that doctors can perform to determine if someone has Lupus, many will use the ANA blood test, but that is not a clear answer. The results can come back inconclusive for some Lupus patients so doctors have to take the entire medical history of a patient into consideration.
13. Lastly, we know that we can not do some normal activities, such as being out in the sun, hiking, or anything that will take a lot of effort out of us. However, we still love it when our friends and family invite us to join them to play board games, babysit, to join them for dinner, and activities that are still possible for us to do. We love to be recognized and included because we have a lot to share despite our disease.
For more information, you can visit the Lupus Foundation of America website at lupus.org, or the CDC's page on lupus at http://www.cdc.gov/arthritis/basics/lupus.htm. We would also love for you to join us and support the cause on May 20th, by wearing purple for Put On Purple Day!
