MEMBERS' STORIES
C.C.N.
When I was first stricken with recurrent erythema multiforme in 1986, someone looked at me and said " well, you know what they say about dermatology patients, they never get well and they never die". One morning,I noticed an itchy red bump on my chest. It was summer so I just assumed it was a mosquito bite. But soon, I had another and another and another....without going outside. The itch was intense and as the small red spots began to grow in size, I started down my very long journey with chronic and recurrent erythema multiforme. It turned out that I was one of the very unlucky ones as my disease has been almost constant - I'm either breaking out, in the middle of breaking out, or healing from the last breakout or a combination of all three. I have seen countless dermatologists and tried many medications. I always ended up back with prednisone for this life defining illness. I discovered how rare this illness is when it is chronic and recurrent over years and years. I"m lucky in some ways because years of prednisone has not negatively impacted my health so far and now there are numerous suppressive treatments for the mechanism that causes EM. My case has been idiopathic with no known cause. The emotional devastation can be as difficult as the physical impact with EM. I do believe medicine is beginning to understand these types of illnesses and finding treatments if not "cures".
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C.M.
I feel like I have PTSD from my one and only encounter with EM. Started my first ever outbreak at the end of August, and it took a long time to resolve... with 17 days of prednisone. I still have the hyperpigmentation spots all over my legs. Now, any time I see a red spot anywhere on me, I feel my heart literally sink, and a sick feeling in my gut. My doctor started me on Valacyclovir in mid September, and so far, so good. I just feel like my encounter has made me so fearful of another outbreak.
G.O.
It’s been 15 yrs since what I think was my first flair up with erythema multiforme. It took many years of trying to find out what I had and a doctor who knew how to treat it.  For a few years in the beginning I was misdiagnosed and was treated under a rheumatologist. I was given medications like Rituxan which treat a completely different disorder and not actually for EM. It’s been a long road to get where I’m at now. I still struggle with flair ups and worry when I get them not knowing how long or how bad this time will be. I’m thankful to doctors who study medications that have been found to help EM. The emotional roller coaster of EM is very difficult, I would say it’s one of many side effects. I hope to one day see a cure!