living with lupus, day by day, moment by moment

My son is used to going to the beach during sunset.   It makes me sad that he has yet to enjoy a day on the beach with me but my lupus makes such sun exposure highly risky.  It is true, lupus is a family disease! 

I am one of two-third of the people with lupus who suffer from photosensitivity.  We experience an increase in lupus symptoms after being exposed to ultraviolet rays, either from the sun or from artificial light.  This means we develop a skin rash like hives on our body and/or a butterfly like rash on our face. Sunlight may also causes a lupus flare, resulting in fever, joint pain, or even organ inflammation.  

I remember the first summer after my diagnosis.  I wore shorts and a tank top, kind of my usual summer wear.  I broke out with rashes all over my body.  My best friend at the time was horrified at how awful it looked.  I was ashamed! But looks aside, I didn’t realize how much damage it was doing to my energy, joints and my organs.  To me, I learned that the sun is truly my kryptonite. 

In those earlier months, I mourned the loss of my freedom — to bask in the sun, to wear whatever I want and not be conscious of what times I can be out.  I quickly got over these laments when I realized just how much damage the sun can do to me.  Now, I avoid direct sunlight from 10am to 5pm.  I wear sunscreen.  I walk on shaded sidewalks. I wear protective clothing. I wear sunglasses and hats.  I take medications such as plaquenil, which is effective against rashes. 

It’s over 90 degrees in New York this week.  It’s time for me to turn into a vampire! 

Are you photosensitive? How do you protect yourself? 

  • How UV Radiation Affects Lupus

    Ultraviolet (UV) light is invisible radiation and contains three types: UVA, UVB, and UVC. Studies published in Autoimmunity Reviews have shown that UVB rays cause the most problems in lupus patients, but UVA radiation is also partly responsible. Exposure to sunlight may trigger the following symptoms:

    • lupus rash or lesions
    • joint pain
    • fatigue
    • internal organ swelling

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