Yesterday I found myself reading an article on UV exposure in a regular newsletter I get from the Lupus Foundation of America. The author described a 33- year-old woman who suffers from Lupus and deals with photosensitivity daily. Photosensitivity is a sensitivity to the ultraviolet (UV) rays emitted from the sun and other light sources. It can cause rashes, fevers, joint pain and other things in people with cutaneous and systemic lupus.

The woman they described leaves the house daily bathed in sunscreen, wearing head to toe UV protective gear, sunglasses and wide brimmed hats. At home she keeps the blinds closed and the lights dimmed. It’s important that she does these things because not only does it stave off the previous symptoms described it also prevents a flare of lupus disease activity.

As I read her story I began to cry…because I know her pain…I’ve done those things.

 Even as I type this I’m fully clothed in sun protective gear due to the UV rays emitted from the laptop screen.

What is Lupus?

Photosensitivity is just one part of Lupus. Lupus is a chronic inflammatory autoimmune disease that affects the whole body in different ways. In a normal persons body the immune system fights infection. It does so by heating up the tissue in ones body and killing off all foreign invaders (like when you’re feverish). The problem with Lupus and other autoimmune diseases is that the body cannot distinguish between a foreign invader and ones own healthy tissue, so the body fights itself—destroying healthy tissue. This has long-term consequences.

My personal story

Apparently I had autoimmune symptoms years before I knew it. About two years ago when my body went into full crisis… I suddenly had a body I didn’t recognize, riddled with arthritis, calcifications in my soft tissue, hair loss, weight gain, weight loss, borderline diabetes, borderline high cholesterol, extreme fatigue and more. I went back and forth to doctors for months…

There’s more we need to know

In my months of doctor visits and research what I found was that not only are tests not sensitive enough to identify specific classifications of autoimmune disease, but treatment is very poor. The whole ordeal was frustrating to say the least. More research and funding is needed.

Why this is especially important to you…

Lupus is a disease primarily affecting black women, followed by Hispanic, then Asian and Native American women.

In searching for answers and realizing there was little information regarding treatment, prevention and cures, I thought, “of course! This is a brown women’s issue. Nobody cares!” It would be easy to stay there and think of it as some kind of conspiracy, but it’s a little more than that… The problem is this… There aren’t many brown people in positions of power advancing the causes of brown people. People fight for what is near and dear to them, so if there aren’t many people in positions to do that…there won’t be many answers for people like me.

Four things you can do

1. If you are in a position of power and can affect change and the level of awareness there is on this issue use your platform to do so.

2. If you’re going to school (or back to school) consider the sciences.

3. If you think it’s too late for you (though it’s really not), expose your son’s, daughter’s, niece’s, nephews and any youth you have influence over to science, research & exploration and gear them for positions of power.

4.The next time you’re donating clothes call The Lupus Foundation of America. They contribute proceeds to research and finding a cure.

Read: 7 Things Chronically Ill People Want You to Know

Do you or someone you know suffer with this disease? Share below. 

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