a throwback to the days...

[Guest guest]

Hi all,

My name is Sunny and i have had EN since i was 13years old(now i am

19).Mine is idiopathic En, as concurred on by the various people.

Tell me about the bumps that nobody can explain and the

misdiagnosis, which was returned back and forth between GP,

Rheumatologist and my dermatologist, whose one contentment was to

prescribe unregulated Prednisolone for a 13year old! Grr!

I have just come through my second flare up after a six year break

and i am breathing easy. I lived in Kenya at the time of the first

flareup and there was not much that i could do as i was in boarding

school and rarely believed by the teachers and the other students.

I know what the waking up to shooting pains at night and the

constant worry whether they would multiiply in the morning. I am not

over the worry and i think constantly about their return.

I just want you to know that i share the feelings about the same EN

concerns. Keep hope going and feel free to share the whine anytime.

much love to all

[Guest guest]

Hi Sunny,Welcome to the Group!As I often tell new members, I was 21 when I first got EN and I'm 58 now. I too am idiopathic. When young people like you join our Group, I am reminded that unless we get angry enough to do something and get EN figured out, you will, unforturnatly live your life under the cloud of EN. I feel it is the failure of my generation for sitting around letting EN go so long with so little original research. It annoys me that with medical science so far advanced in so many diseases, EN has not advanced much at all in the past century. There is no excuse for it. We have let you down and let ourselves down. Thanks to the internet we have at last found a way to meet each other and collect funds for EN Research. But if we keep expecting someone else to fund the research, it probably won't happen.It saddens me to think of the wasted human potential due to pain. As I get older, and reflect more, I think of what I could have done had EN not been such an aggravaton in my life. I don't blame myself for it. I can't blame doctors, as they don't have research to refer to. Well, maybe I can blame some doctors for taking 5 long yrs. to figure out what I had. I think we can all make a difference in the lives of young people, so that they will not have to deal with EN.I hope Everyone gets mad and does something to put an end to EN.Hey, I just made a new slogan:"Put an END to EN!"Goodnight Everyone!Love,