Method of Sun Protection-EPP Clothing

“Can’t you use a sunscreen?”

Sunscreen and glass only partially block UV light. While that may be good enough for many, it does nothing for me. I am harmed by the range of visible light, or the range of violet to blue light, generally from 350nm to 500nm, with 400nm-450nm being the most intense.

After such an explanation, the next question that invariably follows goes something like this, “But then how do you… y’know… (insert common daily activity or enjoyable pastime here)?” Or, in other words, “How do you be alive? …y’know, how is it that your life has any meaning other than locking yourself away in the cold, dark abyss where no one would know about you and I wouldn’t have to think outside the box of my everyday life, pondering the existential frailty of the human condition?”

Well, seeing as you asked…

The first, and most effective, method of protection is, hands down, avoidance. Avoidance, however, is fluid and not always possible to the extent that I need. What I mean by fluid is worth a blog post all on its own, but it should not be difficult to imagine that avoiding the sunlight can be a difficult endeavor.

For those times that I am not able to be inside, such as during my commute to work, I wear heavy clothing. Although heavy clothing does not protect me 100%, it increases my tolerance and allows me to emerge from the cold, dark abyss every now and then.

Here are the clothes that allow me to venture forth into a sunlit world.

I previously had included short backgrounds for the process of choosing each item of clothing in one long article, but have since decided to condense and simplify. I determined that giving brief summaries of the difficulties encountered during my search made this post feel discursive and was otherwise inadequate for those of you who may need more detailed information. If you or or a loved one is struggling with EPP, or if you’re just interested in learning more, I have included links below each respective photo to separate posts with information about why and how I chose each piece of clothing and where I found them.

Perhaps the most fashionable accessory of the anti-sun ensemble is my hat.

epp-hat

Choosing a hat

Although somewhat vogue, these gloves are bad to the bone.

epp-gloves

Choosing gloves

Who is that masked man??

epp-mask

Choosing a mask

Practicality and comfort.

epp-coat

Choosing an overcoat

Denim or canvas is always in style.

epp-pants

Choosing pants

All together, abandoning the comfort of darkness.

in-gear

And, before you ask, the answer is, Yes, I am very hot, thank you very much.

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5 thoughts on “Method of Sun Protection-EPP Clothing

  1. I had to comment as I too have been diagnosed with EPP…I also live in New England. Your blog is amazing. I was diagnosed in January and I am still working with my geneticist and going through additional testing. It was refreshing to get another fellow New Englander’s pov with our crazy weather and the stares when I cover up. This is all new to me and I struggle every day and worry about exposure, even the slightest touch of sun really bothers me. My mother also had EPP, but didn’t know it until it was too late. She passed due to Melanoma. I feel blessed to have found your blog and look forward to your posts!

    Liked by 1 person

    1. Tasha,
      Thanks so much for your comment, and for visiting and enjoying my blog!
      I hope that you will find some useful information, some comfort, and some laughs from my thoughts, feelings, and experiences.
      It is funny that you bring up the stares, because I was actually asked by someone to write about what I feel and think about them. I hope to have that done soon enough.
      This condition can be scary and overwhelming, especially when you are first learning about it. But there is also huge comfort in validation!
      Now that your condition is correctly identified, you can properly explain it as a documented medical condition without feeling the need to justify your sanity to others and, MOST importantly, cope in more effective ways to help you enjoy your life.
      If you have any thoughts or questions, go ahead and ask. I will add them to the list of things to consider in my thoughts as I write.
      Also consider checking out the American Porphyria Foundation. http://www.porphyriafoundation.com Although they focus on all the porphyrias, there is a new drug that they are trying to get approved by the FDA that may help some people increase their resistance to sunlight.
      Thanks for reading!
      Jason

      Like

    2. I also offer you my condolences in regards to your mother. It must have been very difficult for her to live without ever knowing. Such is very common among people with EPP.
      I hope that you have found peace.
      Jason.

      Like

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