Lupus is a disease that occurs when your body’s immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by Lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.

Iron overload is usually caused by an inherited condition called hemochromatosis. Excess iron can poison organs, leading to cancer, irregular heartbeat, and liver cirrhosis. Symptoms are related to conditions that arise from iron overloads, such as diabetes, darkening of the skin, abnormal heart rhythm, or arthritis. Iron can be dropped to safe levels by regularly removing blood from the body.

It is still unknown how one can get Lupus. However, it is primarily genetic or environmental. It is a disease with zero cures, but there are some great treatment options if you can afford them. The average yearly cost for someone with Lupus in the United States is $50,000. Five million people globally have Lupus, 90% of us are women, and you are three times more likely to have Lupus if you are a black woman. It takes on average six years to be diagnosed because it is a disease with 1,000 faces. More than half of those with lupus report consulting four or more different health care providers about their lupus symptoms before being accurately diagnosed. Heart disease is the leading cause of death among people with Lupus, and 60% of all people with Lupus will develop kidney or liver complications.

How does it affect me?

I was officially diagnosed with Lupus and Hemochromatosis at the end of 2020. However, I have been getting tested since I was 18 (a total of 6 years, which is average). The reason why it takes so long is not that your doctor does not believe you; it is just challenging to be diagnosed, and life gets in the way, or at least the was the case with me. It isn’t a simple blood test; it is multiple tests, waiting to see your symptoms, going to this specialist and then this specialist and conducting this test and then this test and then a few more tests.

I originally went to the doctor as a Freshman in college because I could not keep up with my peers, partying and drinking. I told everyone it was because I did not like it, so I would always stay behind, but the truth was my body couldn’t handle it. I would end up being sick for a week. I did not know why this was happening. I was young and thought to be in good health. Well, like any 18-year-old, I didn’t keep up with doctors very well. One year later, I was in Croatia and got extremely ill. I thought it was just sun stoke and rested and was back to enjoying my vacation a few days later. When I got back to the states, I went back to my doctor in Portland, explained that my body had not felt right ever since. She told me to start tracking how I feel for the next year and when I get ill, what happens. Over the next two years, I would again get highly ill while in Macedonia and Mexico City with the same symptoms: racing heart, rash, fever, swelling of my joints, just overall exhausted where I could not move. My ex was not supportive of whatever was happening since I was young and should not be feeling ill all the time. But, he was right, something was wrong, and I had to fix it. The doctor explained that sun exposure could cause Lupus to flare, which combined with all of my other symptoms day today, she had enough to go on to start the process of testing me for Lupus.

However, I moved to NYC and lost health care coverage that was easily accessible. So I had to stop my plan and my testing. Was this a smart move? Probably not, but like any 22-year-old, I was going to do what I wanted; nothing was going to stop me. It was now the summer of 2019, and I broke out in a terrible rash that would not go away; it was mixed with always being tired and not being able to do much. This was my first summer in NYC, and it is so hot and humid.

As soon as the fall hit, I felt better, and the rash went away, so I again told myself I was okay. That fall 2019, I decide to go somewhere every weekend in October; I was in Portland, then Los Angeles, then Montreal, then Paris. The day I arrived in Paris, I started to notice a rash on my legs, a rash I had never seen before. I also got again very ill the day I arrived. I believe it was just a nasty cold, but that virus was the virus that told my body to attack because she is not listening. I got back to NYC, the rash spreading on my legs. I was fixing my shoe at work a few days later, and my colleague saw my rash and immediately thought I had the plaque and made me sit in the back of the office. I was about a month into this rash spreading all over my body; it looked like I had some crazy disease, but it was just on my legs and torso so that I could cover it. I kept thinking I need to fly back to California to see a doctor because I can’t pay out of pocket here in NYC. I booked a flight for two weeks from that point.

The stress of my life right then caused this virus to attack, and this rash spread everywhere, and it had swelled my entire body. My shoes did not fit anymore, and I could not walk from the pain and swelling. I went to the emergency room in November 2019, and she explained I had Lupus or Leukemia. I knew then it was Lupus; I had my Oregon and California doctors already testing me, now this NYC doctor confirming it all. I flew home for a week in December 2019 to officially be serious and finish my testing to get treatment. Then covid hit, and all testing was put on hold, so once again, I was back to square one. Eventually, testing and tracking came back, and I was able to be diagnosed in October 2020.

Since my treatments started in October 2020, I have not had much of any issues, no flares, I should say, and no rashes (thank God!). I get tired from time to time; I still have never partied or overly drank, it became customary to me, and I don’t mind it. I have learned when to stay no and sit something out. I would say 95% of the time, I am just fine and can do anything! Not saying I want to climb a mountain, but I think nowadays I could, whereas five years ago, I knew I would not be able to.

Since the Lupus/Hemochromatosis I have primarily attacks my skin cells and liver, I can not consume iron or liquor often. This has been a significant adjustment as so many foods we eat have iron in them and not being able to enjoy a martini anymore. However, I can have iron enriched foods on special occasions, and I allow myself a few glasses of wine each month. I will live with Lupus my entire life, I am blessed I did catch it early, and my treatments are working as they are designed.

I am praying for a cure, especially for the women who suffer a lot more than I do.