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#4199 - 02/09/08 12:10 AM SSI
William Offline
Member

Registered: 08/16/05
Posts: 7
Loc: Pleasant Plain, Ohio
Hello Everyone,

I have LI and I'm 36 years old. It's covers about 85% of my body. I live in Cincinnati, Ohio.

My question is:
How many of you get SSI?
I have to go see the SSI doctor in about 2 weeks and I'm really neverous about it. Since it's winter here now, and my skin is only half as bad looking as it is during the hot summers here. I just wondering if I should be worried or not. I've never had to have assistance in my life, but have not worked now for 5 years do to AC (office)/HEAT (outside). I need help and SSI could really help me out.
Thanks
William

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#4200 - 02/09/08 05:33 AM Re: SSI
terryleesmith Offline
Member

Registered: 07/05/06
Posts: 45
Loc: Newport News, VA, United State...
dont be nervous.
this doctor is gonna ask you to squeeze his fingers. hes not a dermatologist, and he has never seen any one with ichthyosis.

if you are applying for ssi, you are again getting involved with a system that doesnt understand what ichthyosis is.

more than likely you will be sent to a rehabilitative doctor. be clear to the doctor, what your problem is.

if you are applying for ssi, you will always get rejected the first time.

if you get a lawyer, they will want you to get rejected 3 times.....thats where they get their money.

after you get rejected the first time, you will be sent a package to re-apply.

take pictures of your skin...lots of pictures. go into great detail in the package, about what your daily regimine is.
makes copies of all your pictures and send them in.

this is gonna take more than a year.
good luck.

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#4201 - 02/09/08 05:58 AM Re: SSI
blinky Offline
Member

Registered: 10/24/07
Posts: 39
Loc: Pottstown, PA USA
Hi, The biggest thin with SSI is having lots of medical documentation. I get SSI for something other than ich but I had 4 diffrent doctors fill out paper work if you see a derm have them or an ENT any doctor you can put their name on the paperwork I got it the first time I applied and they with tell you to start from now because they don't want to back pay. Good luck and don't worry they were going to give my son ss for ich but he already get it from me.
_________________________
mom to:
Wyatt 6-22-07 ??? ich
Dakota - 2
Gavin - 7
Ryleigh - 8
Erin - 17

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#4202 - 02/10/08 10:20 PM Re: SSI
William Offline
Member

Registered: 08/16/05
Posts: 7
Loc: Pleasant Plain, Ohio
Thanks everyone,

I applied back in 97 and was rejected.
Haven't seen a doctor since 93
When I was a child I was an army bratt and went to italy for 3 years (Grade-K there), but went to Germany every month to see a doctor.
So all my records are at Children Hospital including from Germany. SSI has received the records. And the doctor at CH was a skin specialist (he was in his upper 60's then).
I've been working on this for 6 months.

Wish me luck
Thanks,
William

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#4203 - 02/11/08 12:11 AM Re: SSI
Elizas mom08 Offline
Member

Registered: 01/18/08
Posts: 55
Loc: Heartwell Nebraska US
We are trying to get Eliza on ssi but I really don't know how to go about it. How do you even start?

------------------
Lacy,Elizas mom possible C.I.E. 4-9-07
Brady 9-10-01
Hunter 7-11-05
_________________________
Lacy,Elizas mom possible C.I.E. 4-9-07
Brady 9-10-01
Hunter 7-11-05

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#4204 - 02/11/08 01:22 AM Re: SSI
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
My daughter's on SSI (she has Netherton's), it really wasn't that hard, she got accepted right away the first time. We just made an appointment with a social security case worker, and explained her condition, brought in notes from her doctor, etc. It got approved in a few weeks.
_________________________
Courtney
Mom to Julia

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#4205 - 02/11/08 02:31 AM Re: SSI
terryleesmith Offline
Member

Registered: 07/05/06
Posts: 45
Loc: Newport News, VA, United State...
wow. it must be different state by state.
after i applied, it was like 3 months before i
heard anything, and that was to set up an appointment to go see a doctor.

but the first thing you just have to do, is go down to your local social security office.

good luck.

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#4206 - 02/11/08 04:32 AM Re: SSI
TiffanyJ Offline
Member

Registered: 11/06/07
Posts: 43
Loc: Jackson, MS
Both our kids get SSI. It was about a 5 month wait on the paper work but they paid them back pay started from the day we apply so they got a big fat check in Nov that really helped with doctor bills. The most important thing is to have alll of your doctor's aware if ich and tell the interveiwer every symptom you have even if you don't have them every day. I even did a phone interview so my kids never even saw anyone at SSI.
_________________________
Tiffany & Edwin White
Taylor 12/10/97
Treasure 6/23/04 lamellar and collodian
Jackson 5/3/07 Lamellar and collodian

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#4207 - 02/12/08 12:34 PM Re: SSI
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hey both my boys get SSI also. It took about a year to get theirs started but it was worth the wait. They both got denied the first time then i appealed it and they both got approved the 2nd time.I wish you all the luck just keep trying until you get it. Like someone said take lots of pics and get it at your worse time your skin looks bad. And im sure right now is the best time to take those pics.

Good Luck

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#4208 - 02/12/08 04:51 PM Re: SSI
ola Offline
Member

Registered: 09/11/05
Posts: 48
Loc: egypt
sorry what do u mean with ssi
ola
_________________________
ola

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