Living With Eosinophilic Cellulitis

Not very many people are aware of this, but I have been diagnosed with Eosinophilic Cellulitis.  

Also know as Wells Syndrome, the disease is technically an “inflammation of skin cells” and involves problems with the immune system and white blood cells. Apparently, the disease is incredibly rare (fewer than 200 cases recorded in literature), and pretty much nothing is known about it.

The simplest way to explain the problem is to say my immune system likes to live in over-drive.  Even the smallest injury (a mosquito bite for example) sends my immune system into a panic, thinking that I’ve been shot and am dying in a cold alley somewhere without treatment. Basically, my body tries to heal an injury that doesn’t really exist. So all of the little skin cells start swelling up, a rash breaks out, my skin becomes incredibly hot, and anything that touches it only spreads the problem further.  It itches like crazy, like any healing wound, but if I touch it the skin cells break open, my skin starts peeling down layers, and it spreads and spreads.  Even clothing is a problem.  

The problem started for me back in 2011, right as I was leaving Virginia. I received a small spider bite on the side of my stomach, and it wouldn’t go away. It swelled up and the redness started to spread. Soon, it looked like I had a bunch of blisters around it, and it kept itching.  I went to the local clinic and was diagnosed with Shingles, because this looks a LOT like it.  

The doctor told me not to scratch and put me on a heavy medication.  Since I was in the process of moving, I ended up just leaving the situation. The medicine seemed to help a little bit, and I wore dresses and lower pants to try to avoid touching the area.  Given that it was during the summer, I took a lot of cold showers to knock off the itching.  And it faded back; the rash dried up and peeled off.  Over time the spots would come and go (usually appearing without cause), often lasting for weeks. 

Then about 4 months later, another spot appeared, this time growing exponentially.  Soon it spread to three other spots, all on the same side of my body. Pants were impossible because the waist only spread it further.  The area was infected, and soon I was again peeling back 3-4 layers of skin. This time I went to the University of Iowa student clinic. The doctor there wanted to diagnose me with Shingles again, but said that Shingles never lasted that long.  So off I was sent to the UI Dermatology Clinic.  By then the spots were several inches in width and height, and it was spreading down my legs.

For the next two semesters, I had extensive testing, biopsies, blood tests, etc. Finally, the dermatologist came back with a new diagnosis–Eosinophilic Cellulitis. The following isn’t a picture of mine, but it is the same disease. Imagine having this all over your side, itching, inflamed, and scarring. At one point, it was larger than my hand on all sides, with an addition three spots growing.  And the worst ones were now peeling even more layers through my skin.  It’s pretty awful.

The doctors have a bunch of different methods of attempting to treat the disease, but as far as I can tell (from listening to my doctors talk around the subject), there is no known cure. Basically they are still testing everything possible to see what works.  They put me on Prednisone, with suspicions that I may have to continue taking it for an extensive amount of time. If not, the suggestion was to start getting shots.  All of it was going to require more tests upon tests, and ever rising hospital fees.  Meanwhile, nothing was promised to actually fix the problem.  

Since I was already planning on being out of the country for Study Abroad and Internships, I needed to find something that would let me control the problem while traveling.   Thank God, with the help of family members who were nurses or who had studied nursing, I was actually able to push back my disease!   I haven’t had much of a break out in almost a year and a half!  Nonetheless, I have to be incredibly careful to make sure that I stay on top of it.  

Because this disease is so rare and hard to study, and because I understand the pain and concerns of people experiencing their own skin attacking their bodies, I wanted to share some of the things I found out.  WARNING: I AM NOT A DOCTOR, this is just what my experience in living with the disease was.  IF YOU HAVE THIS DISEASE/SYMPTOMS SEE A DOCTOR. First, it might actually be Shingles instead. And Second, maybe your doctors will find a cure for the rest of us. Your body is different, so work with them.

FACTS (As Best As I Can Tell)

• Be careful about any ointments.  The doctors tried recommending several different ointments, and a lot of them made the problem worse. I also suffer from extremely sensitive skin and tried using my usual Hydrocortizone Cream on it– bad idea. Spread like wildfire.  I will say that, while in Asia, everyone in the hotel broke out in an allergic rash and the doctor gave us a SUPER-POWERFUL cream.  Since the rash made my skin thing break out, I used it there and it helped a lot. Unfortunately, the cream was in Korean, and I don’t know what it was.
• The Goal Is To Dry The Spot Up.  I found that if I could get the area to dry up, it would start retreating.  Cold and Air worked the best. Putting on some of the Gold Bond powder helps, especially if it’s the “cooling” kind.
• TB tests will spark it.  This is kind of random, but I had to have a TB test recently.  I hadn’t had a break out in months, and there was no sign of it returning. Then I got the test and my arm is now swollen and red. Tests said it isn’t TB, apparently it is just my Wells Syndrome acting up.  Next time they recommend getting a blood test.
• It isn’t contagious.  Unlike other skin problems, this disease does not appear to be contagious. I worked with several people and no one “caught it.”
• It normally sticks to one area of your body. For some people it’s the arm; for me it was my side. Generally, it stays on one side/area of your skin.
• But it can pop up elsewhere. While almost all of my spots were on my side, I have had areas show up elsewhere. Namely on my arm, face, and crotch area.
• It will spread. I found that if I was wearing pants or something that rubbed, it would rub off on other parts of my side, starting up new spots.  Much worse, the little areas can become huge if you touch it.
• It never goes away; it just fades. Although I haven’t had a bad outbreak in a long time, it does show up now and again. Since I’ve learned how to treat it, I stop it in its tracks.  But watch for it.
• I Didn’t Permanently Scar. As a girl, this was a huge concern for me. The more my skin peeled, the redder and purpler it became, and the more I worried that it would scar.  I don’t know about others, but at least for me it never did. The healing skin sometimes took months to stop, but I don’t have any remnants.
• You will never stop worrying about every little itch. Mosquito bite–trauma. Spider bite–trauma. Hives–trauma. Allergies–trauma.  Eventually you learn to recognize the signs, but you will have to live with the concern.

TREATMENT

• DO NOT TOUCH.  I cannot emphasize this enough, don’t touch the areas.  Not even with band-aids or bandages.
• AVOID IRRITANTS. Band-aids, Cloth, Soap, Ointments, Clothing.  All of those can worsen the situation. Even if they get infected or start bleeding, try not to put anything on there.
• DO NOT LET IT GET MOIST.  Showers, sweat, any moisture will cause it to spread further.  If you do have to get it wet, dry it off as gently as possible.
• ******ICE IT********.  There, I just gave the  most effective treatment I know.  I started putting on ice because I couldn’t handle the itch, and ice was the only thing I could think of to numb the area and stop from scratching.  What shocked me is that it worked like a miracle.  The inflammation went down, the rash faded back. It’s like numbing the area told it that there wasn’t anything there to keep going wild over. It deceived my immune system into thinking the spot was fine.   I had to basically keep ice on it as much as possible. On the worst area, I just put some ice in a baggie and bound it to the area non-stop for a couple days.  In smaller areas, I iced it at least 4 times a day and immediately whenever it started to itch.  Now, anytime something starts to itch or I have a red spot, I smack ice on immediately. I attribute my lack of outbreaks in months to this method.
• Take Lots of Cold Showers. I know I said don’t let it get moist, but cold showers seem to be the exception.  The cold worked like the ice, but it didn’t require touching or irritating the area. I try to shower 2-3 times a day when it is at it’s worst.  If you have a seat in the shower, sit for a while and let the cold water run over the area.
• LET IT AIR.  This comes back to avoiding irritants and drying it out. Clothing is a bad irritant and can often leave it in a dark, moister place.  If you can, leave the area open to air as much as possible.
• Try IB-Profen. This helps with the inflammation.
• The itch comes and goes. It got to where I could tell that it was flaming up because the itch would arrive. The spot stayed red, but the itching would start up sporadically. If I could stop it from itching without scratching, I could work on easing it back. It’s like it needed the irritation to spread or keep up the effort.
• It seems to come with stress.  I had outbreaks in this order: Finals, Moving, Mid-terms, Finals, Paper Due, Finals, Traveling Abroad, Stressful Situation at School, Finals. That is literally the precise order.  I’m not sure how the disease relates to stress, but there seems to be a connection. Since then, I have actively worked to control my stress, and it seems to be helping.

Tags: hives, ice