This is the email from the other hs group. Sry if it's hard to read, I copyed and pasted it from my itouch.


i am pasting in a message I see on another group:
*************
Social Security Online
Code of Federal Regulations
http://www.socialse curity.gov/ OP_Home/cfr20/ 404/404-ap10. htm

Appendix 1 to Subpart P of Part 404Listing of Impairments
The body system listings in parts A and B of the Listing of Impairments will no longer be effective on the following dates unless extended by the Commissioner or revised and promulgated again.

9. Skin Disorders (8.00 and 108.00): July 9, 2012.
------------ --------- --------- --------- --------- --------- -
Please note that H.S. is #8.06. This means that unless our disease is extended by the Commisioner or revised again, H.S. will no longer be covered by Social Security effective July 9, 2012.

*************
Someone else wrote the above, and Rick responded with links for writing to your member of Congress, for those in the US. This is all I know, and I sure hope it's not as it seems.

Susan

________________________________
From: "planet1062@yahoo.com"
To: Hidradenitis@yahoogroups.com
Sent: Thu, February 11, 2010 9:25:51 PM
Subject: Re: [Hidradenitis] Re: Questioning post by Rick H. ?????

Yes please keep us posted as I was just approved for SSD....the main reason was HS but I also have crohns, herniated disc and possibly RA. It was the HS that got me approved on the first try - applied in Sept rec'd preliminary approval in Dec and final approval last month. You would think if they were taking this disease away, they would have told my attorney. I know there is a special section for this disease. It would be abserd for them to take it away from us.

Janet
Sent from my BlackBerry smartphone with SprintSpeed

-----Original Message-----
From: DALE RICKWOOD
Date: Thu, 11 Feb 2010 07:26:42
To:
Subject: [Hidradenitis] Re: Questioning post by Rick H. ?????

I'm posting this morning after reading a post that was sent to another group by Rick H. about the proposal to remove HS from the qualifying conditions imposed by SSD.

What is this about? I can find nothing mentioned on the SSD website that mentions that...Does anyone have any information on this or can you Rick explain what the hell is going on.

How can they just remove a condition from the list. Thats like saying..oh well, were removing the condition, so your SSD is now cut-off. I would think that would bring thousands of lawsuits.

Im concerned however as I am on SSD for HS and would like some more information regarding this from anyone who knows anything????????

What the hell??

Dale

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A non-profit group serving the HS communityYahoo! Groups Links

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Wow! I don't know too much about SSD but I was under the impression that any condition/disease could be considered a disablilty as long as you could prove it? I didn't know there was a specific list about which disease are covered?

It looks like all conditions are on that list. It looks to me like all conditions are reviewied every few years. The intent of the list is not that HS is being taken off the list, just listing when it's HS's turn to be reviewed. It's nothing to worry about, just a periodic review, as all conditions are reviewed periodiocally.

well that makes me feel so much better.cause i applied for disability in november and still havent heard anything. :( do you guys know how long it takes to at least get an interview? i know once they see my pictures and all my documents from surgerys i will be appoved. (im praying so!). but im just scared

I applied at the first of November too! Still waiting on the first decision!

k9girlie, don't be dissappionted if your not approved on your 1st try, your 2nd or your 3rd, you may even have to get an attorney. But eventually YOU WILL get it. Some people have an easy time some don't, and there is no rhyme or reason why.

My Mother was turned down the first time and she is completely blind!

You should start calling a few times a week to ask what the status is of your case. Be nice but be persistant.

Dustbucket had a link to a great website about ssd. It's a guy who went through it and has some great adivise.

I hope and prey you get it first try. But many don't and I don't want you to be Discouraged. You deserve it, you need it, and you will get it. Don't stress if ou have to fight for it, most do.

And if they do make you fight for it YOU WILL get back pay from the time a doctor diagnosed you with HS! My Mom got backpaid. It's awesome to get that big lump sum to pay off some bills completely.

If you applied in Nov. it's ok to start calling to see where your at.

What little I know about the processes is what I learned for fighting for my Mom.

1st, "NO, SSD employee is Verbaly accountable". Which means they can blow smoke up your ass all day, anything anyone tells you on the phone means nothing legally. And you may end up talking to 10 different employees with 10 diffrent answers. But if you keep calling and are persistant but nice at least you stay on their radar, your case might move closer to the top of the pile.

2nd, If you do get denied, or it's been taking way to long, Call your congressman. Thats what we had to do here in Florida. We called Mike Hairdopolis's office and he actually had people on staff that fought for SSD for people! Who knew!

I think No. 2 is what finally did it.

I think a lot has to do with what state you live in.

Good Luck! Keep us updated. I've been thinking about going for it myself. Crossing my fingers for you!!! :)

i really hate to hi-jack, plus this is my first post here but, disability for HS ???

either mine is not that bad, or you can get disabilitie for cosmetic reasons????

my hs- pain, sitting down, walking, but only when i have a bad sore, at a bad spot- i'm missing something here

nebu-
yes HS is considered a disability for alot of people with it. mine personally is at stage 3. and alot of the time i cannot get out of bed without alot of pain. ive had 2 wide exision surgerys for my HS and having another one in april. feel free to look at my surgery pics on my profile. :)

Yes hun you are missing something.. while you are at stage ONE there are those of us here that are at stage Three.. with open areas that NEVER close.. some of mine have been open and draining for more than 8 YEARS! I also have cysts and/or open areas in my groin, buttocks, neck, face, armpits, thighs, vaginal lips, clitoris, vulva, just inside and around the opening to my vagina, belly button (which I had removed due to cysts),breasts, rectum..(both outside and just inside),buttocks, between my breasts.. everywhere! HS is generally a progressive disease and while it does NOT progress to stage 3 in everyone, those of us who have progressed out of stage one or 2 MUST have disability, because just sitting (let alone walking) is so painful that you feel you would rather die than face another day of it. IF it were merely "cosmetic" let me assure you, I would definately have a job in the field that I am college educated for and furthermore I would continue my college education and attain the law degree which I worked all my school life for, but sadly I am unable to committ to anything because I never know on which given day I might have a flare up of monumental proportions that literally has me bed ridden for days on end waiting for them to burst and give me some relief. My HS flares are generally cysts that are larger than a golf ball and usually the size of a baseball by the time they are incised or burst. My first cyst was at age 11 and presented itself on my face right between my eyes and was a little larger than a golf ball.. believe me it was the worst experience ANY preteen child could have.. but if that had been my last one I would have never given it a second more thought.. honey this disease is sooo much more than cosmetic.. it affects us emotionally physically AND emotionally. I literally want to rip the heads off ANYONE in my path when I am in a flare, and have suffered so much humiliation because of the stares, snickers, and outright blunt "What on Earth do you HAVE?" that I can not even begin to iterate to you how this feels.. I even had a boyfriend years ago think it was a sexually transmitted disease.. and he thoughtfully "warned" EVERYONE about it!! What a painful experience THAT was. Cosmetic?! Hell no! I WISH this was cosmetic!! I pray that it NEVER becomes more than Cosmetic to you, for if it does you will regret ever slighting those of us with HS so bad that we HAVE to live on disability. Believe me a few dollars a month is not enough money to have to endure this fkn disease, and it REALLY fks ur life up! Hell, ALL the money in the world isn't enough to have to deal with HS!! I would rather live on the streets homeless FOREVER without HS than live even ONE day as the worlds richest person WITH HS!!

i really hope they don't decide to remove HS from disability. my dermatologist says im stage 3 but no where near as bad as the last comment....srry dear, that would really suck!!! "cosmetic" no i disagree, i think poor choice of word. at least medicaid pays for surgeries people have with HS, i dont think medicaid pays for cosmetics.

Hey Rebecca, Please try not to be too hard on Nebu. Did you read his Very first post here? He doesn't know anybody else with this than besides himself, and he's only in stage 1 or 2 maybe.

Saying "cosmetic" was just a bad choice of words on his part. I don't think he realized how bad this can get. I'm gonna give him the benfit of the doubt.

I don't think I've read your story before. I am So Sorry to hear about everything you've been through and are going through.

I was about 25 when this really started for me, I can't imagine having this at age 11 and how hard it must have been for your. I look at my own children who are 12 and 14 now and Thank God everyday that they don't have it...yet at least.

NEBU77 When you have a bad sore in a bad spot on a reoccuring basis and you have to miss work because of it, then it is life interrupting!