Lupus Awareness Month is coming to a close, signaling one thing – summer is on its way! While I am thrilled to not be freezing – I live near the Canadian border – the heat and sun scare bit me just a bit. Why? Well, I am one of the 2/3 of lupus patients who struggle with photosensitivity.
What exactly is photosensitivity you ask? It is a complex symptom that is considered a “major” symptoms for many lupus patients. According to the American College of Rheumatology, it is defined as a skin rash due to an abnormal reaction to sunlight. But for Lupus patients, fever, fatigue, weakness and pain come also come along with this rash. For me, this occurs even after just 5 – 10 minutes in the sun. Over the next 24 hours, I usually will get a fever, rash, extreme fatigue, heart palpitations…and by the next day, be covered in mouth sores.
Gross.
In fact, the heat and sun were such an issue for me, that it was a major factor in my family’s move from sunny, beautiful South Florida to upstate NY – the state I was born in. Of course, there are still sunny days here, but nothing like the intensity of a hot Florida summer day.
So, what do I do when life forces me outside? For starters, I’ve invested in hats, and light long-sleeved clothing. I also try so schedule events out of peak sun times – 10 – 2 pm – and I take advantage of overcast, cloudy days. It’s those days I typically will go hiking at one of the amazing waterfalls or parks here in NY.
I also wear my trusty Shade Sensor, and have done so for the past year. (Watch a great video on how Shade works, here).
Plus, you can now get a $30 discount with the coupon “CHICK30”
Shade is the most accurate, wearable UVA and UVB sensor in the world. It clips easily onto any outfit you are wearing and measures how much UV light you are getting -indoors or out. This information is uploaded to a handy app on your cell phone, and over time, you will learn what your threshold of sunlight is before symptoms begin.
When you first start using your Shade sensor and app, you should be diligent in keeping track of your daily symptoms (there is a section for this in the app). If you are out in the sun say for a company picnic, and you have symptoms the next day, take a look at how much sun exposure you got the day before. Then set a threshold for the app to alert you when you are approaching this amount. Then, take it indoors before you get too much sun and start exhibiting symptoms.
So, how can you get this amazing device? You can check out the company’s website at www.WearShade.com
With sunlight being a major trigger for lupus flare ups, the Shade sensor is another great tool in our chronic illness arsenal. To learn more about the product, check out this awesome video highlighting professional soccer player Shannon Boxx and how she uses Shade to help her decrease Lupus flares.
Let me know if you have any questions!
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