My life with Erythema Nodosum
My name is Rebecca Strecker and I have
had a rare condition called Erythema Nodosum for my entire adult life.
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 bed rest. 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, I started to read what I
could find about EN online. 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. With my
husband’s encouragement, I set up a Yahoo Group, and the friends I’d
found on-line joined up.
In several years our Erythema Nodosum Group became one of the largest
rare disease online support groups.
Desiring research, we partnered with NORD [National Org. for Rare
Disorders] to fund the Erythema Nodosum Research Fund.
The next step was to create a website where patients, doctors and medical researchers could find the most relevant erythema nodosum information in one location. I asked our EN Group for help, and an Angel by the name of Sherry (who was then moderator of the Support and Depression Yahoo Group) came to my rescue. She set up this webpage for us, and we cannot thank her enough for volunteering to do it. Sherry wasn't available when the site needed a major update, and once again, I asked our EN Group for help, and our Member Carrie, with the help of her Web Designer friend Ron, put this wonderful website together. Carrie is now our Webmaster and maintains this valuable internet resource.
(You can find links to Ron's "Hug Page", and "Cards From Ogden Point" site on our "Friends OF EN" Page.)
Since the Group was founded in 2003, I have met many new friends who
have EN. Both our online Support Group and new Website have a wealth of
erythema nodosum resources for patients, doctors and researchers.
We have made friends with people in the Sacroidosis and the Crohn’s
community, and freely share information with them and all those with
other related disorders. We have every reason to anticipate that medical
research will produce effective treatments and cures that will benefit
us all.
I feel honored to have the support of my husband, my EN group, and my
network of friends.
I hope you will join both our Support Group and visit our Website often,
as we update you on the latest EN information.
Love,
Rebecca Strecker
