Frustrated

[Guest guest]

<<I still can not understand why this is not taken more seriously. I have had 4

major surgeries and have never been in this much pain , the joint pain

especially was bad. It makes me angry when I think about the fact that we all

talk to each other and there are alot of us and its not even being researched

?????>>

Hi ,

EN is not life threatening, and while there are thousands of us who suffer from

EN most people have not even heard of it. The only way we will get the research

is to pay for it ourselves. It is like this with many rare disorders. Most of us

are adults--so we can't show the world a sick kid. People may sympathize with

us, but while EN may make us miserable it won't kill us. Donations generally go

to the killer diseases and the ones that strike kids.

Still, we can get research IF we donate to EN Research. It is set up through the

National Org for Rare Disorders-- NORD. Anyone with a credit card can make a

donation through my poetry website:

http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/

or send a check to me [endorsed to NORD] and I'll mail it to NORD for you.

Strecker

10182 Northampton Ave

Westminster, CA. 92683-7575

Or send your check to NORD directly and specify the funds are to be earmarked

for the erythema nodosum Research Fund

National Organization for Rare Disorders

55 Kenosia Avenue

PO Box 1968

Danbury, CT 06813-1968

Dear NORD,

I want to help find a cure for erythema nodosum!

Please accept my donations to NORD in the amount of __________

and apply it to the:

ERYTHEMA NODOSUM RESEARCH FUND

Send me a receipt to show this is tax deductible.

Yours truly

___________________________{your name}

That is all there is to it! If we all give what we can, we can get some

research. I don't think we will find the cure without it.

Love,

idio EN since '68 in Remission now

>

> I was about to start on Plaquenil but did not want to . I was on Prednisone

and that began to clear it right up until I weaned off , then I broke out again

for about 2 months. During that time i took absolutely nothing  except Tylenol

and waited it out. I still have bruise like marks and sometimes it feels like it

will come back. I seem to get this tingling pain in my toes right before an

outbreak I can just tell , seems odd but true. I had it really bad the knots

would come together to form very large single ones , I have no idea. i was

working in cosmetics as a manager and was exposed to some things that may have

caused it ?? Other than that the only thing I can think that caused it was

stress. I still have stress as we have moved again but i am hoping it will stay

at bay. I have suffered what I think is a bout of depression brought on by this

.. I still can not understand  why this is not taken more seriously. I have had

4 major surgeries and have

> never been in this much pain , the joint pain especially was bad. It makes me

angry when I think about the fact that we all talk to each other and there are

alot of us and its not even being researched ?????

>

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> ________________________________

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