AN ESTIMATED FIVE MILLION PEOPLE AROUND THE WORLD ARE AFFECTED BY LUPUS, WITH 16,000 NEW CASE OF LUPUS BEING REPORTED EACH YEAR. IT AFFECTS ONE IN 537 BLACK WOMEN. SINCE SYMPTOMS ARE DIFFERENT FOR EVERYONE, MOST PEOPLE DON’T EVEN THEY HAVE LUPUS.
WHAT IS LUPUS?
Lupus is an autoimmune disease where the body’s immune system attacks healthy tissue. The immune system exists to protect you from illness by sending antibodies AKA “the troops” out when it sees something is wrong.
With Lupus, “the troops” are dispatched when everything is okay, therefore creating a problem where one didn’t exist causing inflammation & other complications. It can attack the heart, the brain, the kidneys, the skin, the blood and more.
WHAT ARE SOME OF THE COMMON SYMPTOMS OF LUPUS?
Symptoms can include fatigue, joint swelling, chest pain, rashes, hair loss, sun sensitivity, fevers, anemia, blood clots. A lot of autoimmune diseases mimic each other and can cause misdiagnosis; I know I received a few. So it’s important to visit your doctor if you start experiencing symptoms.
HOW IS LUPUS DIAGNOSED?
After a patient presents with a number of symptoms, she or he will take several tests including an ANA test that identifies the type of antibodies that are released in the body. People with autoimmune disease will likely test positive. Also other tests checking organ function and other conditions will be given.
Since symptoms don’t tend to pop up all at once, it usually takes about 6 years to get a diagnosis. My timeline was incredibly short because I took note of every new symptom that popped up & then jotted it down in my phone. By the time I ended up in the hospital, I was able to show my ER doctor all of the symptoms I had been dealing with over the course of 6 months or so. I got my diagnosis 3 days after that.
WHAT CAUSES LUPUS? CAN FLARE UPS BE PREVENTED?
The exact cause of lupus isn’t known, but there are genetic factors, so we as a people need to do better about discussing health issues that run in the family. It isn’t a fun conversation, but it’s a necessary one. I didn’t know until after I was diagnosed, that I had 3 cousins who had lupus.
Flares are when lupus activity is high and illness ensues; there’s usually a trigger. Flares can cause organ failure, and all of the symptoms I talked about to kick into high gear. Every lupus patient is different, so our triggers can vary. I know extreme levels of stress caused by other people and long periods of sun exposure are triggers for me.
To prevent future flares, I eliminated certain people and the things that stressed me out from my life and protect myself in the sun. It was VERY hard, but my health was most important. The only food proven to trigger a flare is alfalfa sprouts.
ARE THERE DIFFERENT FORMS OF LUPUS?
Yes, Systemic, which is the type I have – it affects the entire body; Cutaneous, that affects the skin – rashes, lesions; neo-natal & drug induced. The last two are temporary and the symptoms typically go away.
DOES DIET PLAY A ROLE IN LUPUS? IF SO WHAT TYPES OF FOOD NEED TO BE AVOIDED?
A: I am not a physician, but diet & exercise play a huge role in my ability to live a full life. I was able to identify what food caused inflammation in my body and eliminated them; I dropped meat, dairy, anything processed, and a ton of other things that specifically cause inflammation in my body, including eggplant, Brussel sprouts, chocolate & other foods that aren’t necessarily bad.
I haven’t been on medication for a few years now and maintain a very strict lifestyle. Keep in mind that Lupus is a condition that affects each person differently, so the foods that cause inflammation for me, may not in a fellow lupie.
WHAT IS YOUR OPINION ON CLINICAL TRIALS AND ALTERNATIVE TREATMENT OPTIONS?
I believe those are two viable options for improved treatment & wellness. In my experience, alternative treatment options, have worked out well.
That includes my rigorous diet, high intensity exercise, constantly eliminating stress and finding mental peace. I started my video production company to alleviate work stress & came to peace with having lupus by telling patient stories through video. I found my happy place there.
know a lot of Black people are terrified of clinical trials and rightly so. The history of clinical trials, for us, in this country is vile. Unfortunately because we don’t participate, scientists don’t really know how certain therapies react in “us”.
\So ultimately, when you’re prescribed something, you are participating in a clinical trial, and then hey, we’ll see what happens. We need to get on the front end of this. About 5% of black people participate in clinical trials. This is a brown person’s disease, so we need to be a part of the conversation.
There are regulations in place to protect participants, and not all trials require you to try drug therapies; some are just surveys.
HOW DOES HAVING A POSITIVE ATTITUDE IMPROVE CARE?
I’d like to think I’m a nice person anyway, but it’s important to be nice & positive when you’re in a hospital. Remember that doctors & nurses are people too and while they have to treat you, if you’re rude or not nice, your care may reflect that.
Also, the mind is such a powerful thing, I believe being positive aids in the healing process. You are well because you think you are well; you can be sicker because you think and accept that you will just be sick. Meet your body halfway and get your mind and spirit on board!
WHAT’S THE BEST WHY TO FIND OR CREATE A SUPPORT SYSTEM?
A: When I first diagnosed, I just wanted to talk to some OG’s in the Lupus game and see what life would be like. I was scared. This advice applies to anyone dealing with some sort of dis-ease. Look up local support groups and keep attending different ones until you find your community.
If you live in a more rural area, online support groups and communities are amazing. Also follow folks who inspire you, share your story & ask your homegrown community to keep you accountable for your wellness. Then, reach out to them if you’re dealing with a new symptom or chronic issue, find out if they’ve ever gone through something similar. Trust me, it helps a lot!
WHEN IT COMES TO PAYING ATTENTION TO ONES BODY – WHAT ARE SOME THINGS TO LOOK OUT FOR?
You know you best! Always be aware of what your “normal” is and when it feels off, pay attention. Advocate for yourself, ask your doctor a lot of questions, take notes at your appointment. Don’t just accept things you don’t understand.
Look out for extreme fatigue, and I don’t mean just being tired; fatigue comes with heaviness in the body, and feeling as if you just can’t get enough sleep. Joint swelling, rashes/eczema, unexplained low-grade fevers…a patient will likely present a handful or even just one of these symptoms at a time, so keep track.
WHERE CAN LISTENERS GET MORE INFORMATION?
The internet is a wonderful & sometimes scary place for information so BE SURE to review reputable sites. I do a lot of advocacy work with the Lupus Research Alliance (LRA). Their website is lupusresearch.org. You can also reach me on social at ProducedbyANP.
Lupus advocate Adrienne Nicole answers your lupus questions on the next page.