Strange Afflictions – Crazy Clown Lips Disease (aka Cheilitis + Angioedema)

IMG_2077Last December, I boarded a plane to Florida to visit family for the holidays. By the time my cross-country flight landed, I had tingly red lips. Itchy. Swollen. This had never happened to me before, yet my mom had had a similar issue, one I dubbed “crazy clown lips disease.” For a more scientific explanation, look up cheilitis and angioedema (beware that scary images of lip swelling abound).

For Mom it started out of the blue one day (just like me); she thought it was linked to her new high blood pressure medication. Bouncing from doctor to doctor, no one could figure out the problem. She was finally sent to an allergist who told her, “You’re not allergic to anything, you’re dehydrated.” She stepped up the water intake and the lip issue eventually resolved.

IMG_5458Armed with that familial knowledge, I believed I too was dehydrated. I’m sure I was. It was winter – and certainly long-distance plane rides can dry you out. When I returned to San Francisco I set out a glass pitcher filled with 64 ounces of water and aimed to drink it everyday. Most days I drank even more (up to 12 eight-ounce glasses), and my body seemed to want it.

I felt less sluggish, my skin looked better, and yet….the lips! Here’s the synopsis of my never-ending cycle: lips blow up to twice their normal size, burning and bright red, then after a couple of days the swelling recedes and lips shed like snake skin, leaving a set of baby-skin-tender lips to start the cycle again.

Here’s how bad it got: I couldn’t bear to have food touch my lips (it would get embedded like quicksand); the tine of a fork could start a geyser of blood from a paper-thin tear; lipstick seemed to permanently tattoo my lips; I had to drink wine from a straw (oh the horror).

Bee Stung = Ouch!

Bee Stung = Ouch!

My extreme discomfort pushed me to share my dilemma with every person I met. How could they not notice this hideous disfigurement? In truth, most of them couldn’t tell a thing. My running joke: “People pay good money for this.” Beestung lips may be desirable for some, but in my case I really felt the sting!

My condition seemed directly linked to sun/wind exposure. Here in SF, I am constantly exposed to high winds. And I’m constantly outside (walk to work, walk to store, walk to restaurant). My lips hurt wherever I go. Aquaphor is the only thing that protects them from the elements, yet I have to keep reapplying (and I don’t like the idea of eating petroleum jelly on a daily basis). Too much heat or wind-whipping, and they will swell anyway, especially if I drink alcohol after spending time in the sun.

Five months in, I finally caved and went to the dermatologist. I was going on a Bahamas cruise and didn’t want to blow-up on the boat. The doc gave me two applications (one antibiotic, the other steroid). I applied them both for seven days, and my lips felt great. As soon as the treatment stopped, however, the problem came right back. I could tell the steroid ointment helped – I really wanted to maintain that “normal” feeling – but the doctor warned that steroids cause thinning of skin and cannot be used indefinitely.

My mom’s condition lasted 4-5 months. In her case, the redness/itchiness extended into her cheeks (Joker lips). My irritation never got too far outside the vermilion border (lip edge). But I did have that crazy recurring blow-up swelling, which didn’t happen to her.

IMG_6526Then I had an epiphany: one day I applied an “agave lip mask” moisturizer before heading off to teach a class. I did not go outside (drove from garage to garage), and by the end of class my mouth was aflame. This was no weather-induced flare up! I googled the product and sure enough, other women were having similar allergy issues. In fact, all the lipstick/lip gloss I was using from that same brand was causing a reaction.

You must think I’m pretty dumb. How could I not know I was allergic to my lipstick? I guess because I used it for over a year with no problems. In fact, I loved this brand so much that I got rid of most of my other lip products. Right before I started having the lip issue, I bought another shade of my favorite gloss. Then I wore it on that fated plane ride to Florida…..

Bite Beauty, I will miss you

Bite Beauty, I will miss you

Most people love this new brand: Bite Beauty. Organic ingredients. Food grade. I thought I was doing my lips a favor. Turns out “all natural” doesn’t necessarily mean allergy-free. It could be a reaction to lanolin (also found in some Burt’s Bees products). It could be the dyes – Bite uses food dyes since they are “food grade” products. I don’t know the answer yet. I do know that other lipstick/gloss brands are not causing the blow-ups. If I’d paid more attention earlier, I could’ve saved myself a lot of lip ache.

So it’s been a full seven months, including five weeks since the last Bite blow-up reaction. How are my lips now? Still extremely dry, still very sensitive to the elements. I walk around like a scarfed bandit, dreaming up clever ways to cover my mouth – wax lips, football mouth guard. I’m waiting for that day when my lips feel normal again (Mom says it’s coming). Until then, these are my tools:

wax lips1. Drink plenty of water
2. Organic coconut oil before entering shower
3. Organic Shea butter – thick and moisturizing
4. Ultra Repair Lip Therapy by First Aid Beauty
5. Aquaphor for the best protection from wind/sun
6. Avoid drying lipsticks, pay attention to ingredients

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