My Life With Erythema Nodosum

My life with Erythema Nodosum
My name is Rebecca Strecker and I have had a rare condition called Erythema Nodosum for the past 38 years. My first experience with EN came in the summer of 1968 when I was in my early 20’s. It started like a bad case of the flu and then I got bite like appearances on my lower legs. The bumps were red, hot, painful and tender. I felt malaise and ran a fever. After a couple weeks I felt well enough to return to my summer job which thankfully required no standing.
My doctor said it was a reaction to bug bites, and eventually it did resolve. A couple years later the nodules reappeared and this time I asked my Ob/Gyn what I should do. He said I had phlebitis and prescribed support stockings. After another bout of EN I showed the lumps to my new Ob/Gyn, and he knew it was one of the "erythemas" and sent me to a dermatologist. I was correctly diagnosed on the spot….5 years after my first EN episode.
I was happy to know what I had, but disappointed to hear that there was no effective treatment. The dermatologist said I had a mild case since it responded quickly to bedrest. Since all tests showed I was healthy, he saw no need to do a biopsy.
I did not have any related condition, and no "trigger" was ever discovered for my EN flare-ups. I was therefore thrown in the "idiopathic" EN category.
I lived my life with EN going in and out of remission. I married a wonderful guy and explained my EN to him. He wanted to know if it was contagious, and I had asked my dermatologist that question years ago and he told me "no".
Although EN has colored my life in the work I have been able to do, I do not feel it took away anything from the happiness and quality of my life. I became quite interested in health issues and read all I could find about EN in medical books, but I never knew a single person who had it. In that way, I did feel alone.
When my husband and I got our first computer three years ago, I started to read what I could find online with regards to EN. I thought, perhaps, a cure had been found. I was surprised that not much research had been done on EN and that treatments weren’t much different from ones I was familiar with.
Then I started to search the net for others who had EN, and to my delight I did find some. We talked about our similarities and differences. It was so wonderful to finally connect with others who could relate to my experience.
We decided it would be great to start our own EN support group.
 
http://health.groups.yahoo.com/group/erythema_nodosum_Group/

With my husband’s encouragement, I set up a Yahoo Group, and the friends I’d found on-line joined up.
The last 3 years have been so very exciting for me. I have met many new friends who have EN, and our group site has a wealth of resources for those with EN and related conditions. We have made friends with people in the Sacroidosis and the Crohn’s community where research is ongoing. We have every reason to anticipate that research of these disorders will in time produce effective treatments and cures that will work for EN as well.
I feel honored to have the support of my husband, my EN group, and my network of friends.
I hope you will join us!
Love,
Rebecca
ENLady ENLady
56-60, F
2 Responses Apr 24, 2007

Hi Rebecca,
I have just signed up to join this group! I am delighted to know there is a group for people with EN. I am from a small place, and do not know anyone with the condition.

I am so grateful to have found this group. I was diagnosed just 3 months ago. My first diagnosis was Shingles and I took the prescribed meds although I knew deep down that this was incorrect. After about 2 weeks with no improvement I returned to the ER and was finally give the diagnosis of EN. I am a retired nurse but like so many others I have never heard of EN. I felt like a Leper and some days want to be shipped off to the colony! LOL.... It's so difficult to explain to people what I have. I am just waiting for remission, I have had new outbreaks every 2 - 3 days for the past 3 months with the majority of the lesions on my arms and back. I have only had a few on my face and they were small. That has been a big fear since this began. Thanks again, it feels good to know that there are others who can understand my agony.