August 21, 2017

PMLE – The Sun is now Sally’s Great Enemy

Boston—I had spoken to my dear friend Sally on the phone now and then but hadn’t seen her in quite a while. On a visit here I was stunned to see the horrors she has been going through lately.

Awful!

As you know, we read of new medical breakthroughs all the time. Fantastic, incredible breakthroughs.

Well, it turns out there are also terrible new afflictions coming up all the time. Dreadful afflictions impossible to imagine.

Sally has an awful one. I never heard of it. She told me about it, but only after I noticed how strangely she dressed she was to go outside. It was a nice day—late September at its best. I had stayed with her at her townhouse overnight. Now, breakfast over, we were going out for a little walk.

The sun was behind a cloud for the moment. It was warm out and I was fine in my short sleeves. I had left my tie off and my collar was open.

But Sally was going out so over-dressed. She was wearing long pants. She had a long-sleeved blouse on with the sleeves and the collar buttoned. In fact, she had three layers on. Plus a long-sleeved jacket with the collar buttoned and in fact the collar turned up. Plus a scarf wrapped around her neck.

Sally will venture outside now only when protected to the maximum this way

She was also wearing long gloves, and had carefully tucked them into her jacket sleeves.

Finally she put on a hat. It had a big, wide brim all around. And just before she opened the door for us to step out, she pulled her jacket collar up as high as possible. Pulled the brim as far down all around as possible. And adjusted the scarf to cover as much of her cheeks as possible.

As I say, this was a nice late-summer day. I was sure that nobody, nobody else in all of Boston was dressed this way. Oh, maybe a nut. Or some criminal hiding from the law maybe.

I was startled by her get-up. This was not the Sally I remembered. And she noticed.

“Yeah, I know I look strange. I have a medical problem, John.” She said it matter of factly. As if not news. “It’s called PMLE.”

“PMLE! What the heck is that?”

“That was my reaction, too. I was surprised just like you when my doctor told me. I had never heard of it. It stands for polymorphous light eruption.”

“Polymorphous what?”

“Polymorphous light eruption. Yes, it’s an awful name. A real mouthful.”

“I never heard of it. And I’m up on such things.”

“I’m sensitive to UVA ultra-violet light. Sunshine! Yes, sunshine! I’m extremely sensitive to it. It does an awful job on me. I have to shield myself against it. I dress like this to walk to my office. I dress like this to do anything and everything outside. It has really, really changed my life.

“I used to love the sun. Now the sun is my enemy. I don’t dare step outside without an outfit like this. I go out as little as possible.” She took the brim of her hat and pulled it down even tighter.

“And it’s such a nuisance to have to dress this way. I plan everything so I go out as little as possible. Not just to buy a newspaper. Or to take out the rubbish. Or to chat with a neighbor. I’ve stopped all that.

“In the house I make sure I don’t let the sun shine in, ever. I’ve had a special coating put on all my windows to shield me. I need protection even when the sun is behind a cloud, like this right now. Yes, when I’m in my own house. It’s an awful way to live. But I have no choice. Otherwise I’d be a mess. In fact, I’ll show you when we go back in.”

Now, the truth. Sally is not her real name. I’ve called her Sally to protect her privacy. In fact, she insisted on that. She’s a professional lady. Sometimes people misunderstand. She’s trying to minimize her problem. Not easy when she has to take such extreme and publicly visible precautions.

I’ve changed some of her other details, too. All she’ll let me say is that she has a profession. “I’m lucky that in my work I have limited contact with the public.”

And she’s had a committed relationship with a man for ten years. “He’s supportive. Very supportive. I’m sure it’s very hard for him at times. So, I’m lucky that way, too.”

We had a good talk about all this.

A big outbreak. Very uncomfortable. It takes a while of no exposure for this to calm down

Inside again, I whistled when she showed me pictures of herself suffering from PMLE. Pictures of her bare back and upper chest. An awful rash. Never knew a rash could be so extreme and so devastating. Red, burning, itching skin. Very hard to live with.

She pointed to her neck and shoulders in one picture.

“This was at the height of one attack,” she said.  “But I have avoided this level of severity for 10 months. Thank God! By going out as little as possible. And you saw how I dress when I do.

“I take meds every day, too—two different anti-histamines. Sometimes I worry about possible side effects.”

It became even more fascinating when she told me background stuff.

“I was severely burned when I was 21. Sunbathing! I loved going to the beach.

“That seemed to be the start of this. Afterward I had odd reactions to being out in the sun. Red, blotchy outbreaks like this. I couldn’t figure it out. It was bad but I didn’t go around moaning. It got worse.

“I mentioned it to my primary care doctor, of course. He made suggestions. I was a good patient. Then I went to a dermatologist. Felt I had to. He figured it out. PMLE! That was a year ago. Bad news. I live with PMLE every day.”

It turns out you can have various degrees of it. There are light cases. Often they go away after a while. Then moderate cases. Then severe cases.

Sally discovered an online PMLE group. It has close to a thousand people.  All backgrounds. Many different places. Most in places with lots of sunshine. She checks in often. “We learn from one another.”

One thing she’s learned is no known cause for MBLE. It seems that her terrible sunturn years ago had nothing to do with her MBLE. That seems strange. Studies are continuing.

She’s found out that she must layer her clothes. Choose very dense fabrics. One layer isn’t enough. “The rays can penetrate!” In fact, she buys some items especially made to be protective against UVA.

She’s even had her car windows coated. So she can’t drive with the windows open any more.

She went on. “Summer is most difficult. All those clothes! It gets awfully hot. And I stand out a lot more. Some people stare. One good thing is that it’s very rare for anybody to remark about it or ask questions. I’m sure some are tempted.

“So, it’s easier in the winter. Much shorter days.  Far less sunshine. And I don’t stand out as much when I go out.”

She’s developed strategies to help her cope. Last January she and her man went to Iceland for a vacation. It’s farther north, of course. Only five hours of daylight a day. And such a relaxing place. A smile. “We had a grand time. It did me a lot of good.”

Again she paused.  “There are worse things, I’m sure. I believe that I have a severe case. I have no doubt about it. Now I’m slowly accepting PMLE better.

“Of course, I keep hoping that it will clear up. But so far I haven’t had any indication that it will.” She managed a thin smile. “What will be will be, I guess.”

I mentioned up top that MBLE is a little-known affliction. Let’s hope that none of us ever get to know it better. Personally, I mean.

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