Native Americans, Lupus, and Me
My name is Shanna Garcia and I am Lipan Apache and Mexican American.
I was diagnosed with lupus in 2010 at the age of thirty. I was told then that I would be lucky if I make it to my 32nd birthday. I am now 39 and I have since become a minority patient advocate.
Lupus is two to three times more prevalent among women of color, this includes those of African American, Hispanic, Asian, and Native American decent. For Native American patients, they are often diagnosed with systemic lupus erythematosus (SLE) earlier in life, and present worse concurrent rheumatic diseases or symptoms. I, for instance, have SLE, fibromyalgia, rheumatoid arthritis, and Sjogren’s Syndrome. Sadly, I had a difficult time finding a lot of facts about Native Americans and Lupus. This is a topic that has not received a lot of attention. I was shocked when I found out that there where many lupus warriors on Native land that were (and still are) having an extremely hard time living with lupus. I was even more shocked when I learned of the lack of resources and knowledge about lupus that was available on the Reservation.
My lupus diagnosis, like many of yours, was a late diagnosis. My doctors now believe that I have had it my whole life, which truly explains a lot. I went through many unusual illnesses as a child. When I was eight years old, I would faint when I would try to clean my bedroom or do the dishes. My mother would often think that I was just trying to get out of my chores, like any child. It wasn’t until the doctor said that something was wrong that she began to take notice of my weird symptoms. The best that the doctors at that time could come up with was that I had an unusual type of asthma called exertion asthma, which is now called exercise induced asthma. This would begin the journey to my unexplained sickness.
Native Americans are often diagnosed earlier in life. I wish that my doctors could have found my lupus earlier. Lupus stays hidden and often many of us get misdiagnosed. When I discovered the connection between my Native American heritage and my lupus, I began asking my family questions. I started searching for other family members that had lupus. I discovered that I have two cousins with lupus. When I asked them why they didn’t tell me about their lupus, it struck me. In our culture we do not talk about being sick. We suffer in silence. I myself didn’t tell anyone that I had lupus for quite a while. Another part of our culture that hinders us from being diagnosed, is that we often do not go to the doctor when we are sick. We just keep pushing forward. There were many times for me and others that I know, that we just thought we needed more sleep. We didn’t understand that what we were going through was lupus fatigue and that our bodies were attacking itself.
As I continued to research and advocate for myself, I continued to learn that there is definitely a link between my genetics and lupus. It is still frustrating that there isn’t much knowledge out there about lupus and Native Americans, but I know generations before me, paperwork and records just didn’t exist. This can cause a major issue as well, since we do not know if any of our ancestors before us had to go through this. We can only assume.
Realizing this sent me on my journey to educate and advocate for lupus awareness. It’s important to talk about it and to spread awareness. I kept thinking, what if there was someone out there that was just like me and feeling lost and confused?
I consider Chicago my home, and lived there for some time. However, I had to move to Arizona due to the crazy Chicago weather and how it affected my lupus. I love getting to know my surroundings, so I explored. During my exploration, I discovered that I live near many Native Reservations. There are many different Tribes near me, and I began to visit them. The first time I was on a Reservation it was to get fry bread. I was talking to the mother and son who were preparing it and they noticed that I was walking with my cane. The mother asked me what was wrong, and I told her that I have lupus and that there are times when my body doesn’t want to cooperate and that I need the extra help getting around. She then informed me that her sister had lupus and that she was just diagnosed. She also informed me that her sister was frustrated because there was no one to help her. Native Americans often face significant barriers to care, including lack of insurance and limited access to medical care.
Also, even if patients have access to insurance, patients who live in remote impoverished areas are less likely to receive regular care from specialists. The doctor that diagnosed her admitted that he had very little knowledge about the disease. This is what leads to less effective treatments and worse outcomes. Her sister felt lost and confused. I’m sure many of us understand this feeling. She told me that she was trying to learn more about the disease, but that it is hard to get information about it on the Reservation. I then told her that I was able to get her some and that I would like to come and visit with her and her sister and give them all the help that I can.
I am blessed to work with the Lupus Research Alliance, and they have been able to supply me with resources that I can deliver to the Native hospitals in my area. Through all of my travels and visits to the Reservations, I have seen how important it is that I and my fellow lupus warriors continue to advocate. I hope and pray that a cure is in our near future.
Lupus Warrior & Advocate