Re: Off Topic!!!Office of Rare Diseases Puts EN on their List

[Guest guest]

Dear M,

I couldn't have said it better.... you are amazing... Thanks again for all you do is right!!!

Jackie

Re: Off Topic!!!Office of Rare Diseases Puts EN on their List

WOOHOOO!! Good job, , and congratulations!!Thank you for all you do!M> Dear Group,> After going back and forth and arguing my case that idiopathic EN IS a> rare disorder--citing from our links and our group's experiences, we> are now given the respect we deserve. ORD has placed us on their Rare> Diseases List (pending future information that may prove it isn't rare).> Finally we are given the respect we deserve! Here is the ORD Link:> http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=9260> Love,>

[Guest guest]

Dear M and Jackie,

Thanks for those kind words. It is great to be appreciated! I am

hoping that now we will at least be be in the running for some grant

money to get needed research. Until being recognized as " rare " we were

in limbo.

Love,

[Guest guest]

that is excellent news.

My problem is I was never given a name just Erythema Nodosum.

I have never been in remission just constant EN

Sharon

>

>

> Date: Thu May 13, 11:17 AM

> To: erythema_nodosum_Group

> Subject: Off Topic!!!Office of Rare Diseases Puts EN

on their List

>

>

Dear Group,

After going back and forth and arguing my case that idiopathic EN IS a

rare disorder--citing from our links and our group's experiences, we

are now given the respect we deserve. ORD has placed us on their Rare

Diseases List (pending future information that may prove it isn't rare).

Finally we are given the respect we deserve! Here is the ORD Link:

http://ord.aspensys.com/asp/diseases/diseaseinfo.asp?ID=9260

Love,

[Guest guest]

Dear Sharon,

As you know EN is oftentimes a marker for something else going on

like Crohn's or Sarc. Idiopathic just means they can't find whatever

is causing the EN. I do believe both Sarc. and Crohn's are listed as

rare disorders in their own right, so the only way to list EN was to

say " idiopathic " . To have one of the other disorders makes the EN a

" secondary " disorder that is occuring due to the first. The lady at

ORD was making that distinction, so I was happy to have her specify

idiopathic even though the link she quoted from showed the idiopathic

EN is less rare than sarc or Crohn's induced EN. We were getting in to

semantics. As far as I am concerned, EN is EN, and we all have more in

common than not. I personally feel that " idiopathic EN " is just what

doctors say when they can't discover what is causing it.

Love,

idiopathic EN since '68

[Guest guest]

I had the EN way before I did anything else. Like my Sarcoidosis.

Sharon

Re: Off Topic!!!Office of Rare Diseases Puts EN on their List

Dear Sharon,As you know EN is oftentimes a marker for something else going onlike Crohn's or Sarc. Idiopathic just means they can't find whateveris causing the EN. I do believe both Sarc. and Crohn's are listed asrare disorders in their own right, so the only way to list EN was tosay "idiopathic". To have one of the other disorders makes the EN a"secondary" disorder that is occuring due to the first. The lady atORD was making that distinction, so I was happy to have her specifyidiopathic even though the link she quoted from showed the idiopathicEN is less rare than sarc or Crohn's induced EN. We were getting in tosemantics. As far as I am concerned, EN is EN, and we all have more incommon than not. I personally feel that "idiopathic EN" is just whatdoctors say when they can't discover what is causing it. Love, idiopathic EN since '68