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I have been diagnosed with HS (Hidradenitis Suppurativa)

 
Anonymous Coward
User ID: 32908182
United States
01/23/2013 10:01 PM
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I have been diagnosed with HS (Hidradenitis Suppurativa)
the news from the doc came as a shock today
as he told me the bad news.

I have had it all my life as I got it
through my genes however it has only
became worse as I aged.

What some in biblical times called
leprosy I presume. But not spread by
contact.

Now I have become disabled due to
it's torment and pain associated
with HS.

I was denied disability 2 yrs ago
but after this diagnosis I am trying
once again. I have contributed to SS
for 36 yrs of my life. It's time I
get a lil back. Wish me luck

HS or Hidradenitis Suppurativa is a
very rare disease which only affects
about 1 in 600 people and it is passed
on through genetics to your children.

[link to en.wikipedia.org]

I had never heard of this disease until
today. There is also a foundation for
HS sufferers in the UK.

[link to www.hstrust.org]

Interesting that the genealogy of this
disease can be traced back to Ashkenazi
Jews in Europe.

Could I be a genetic Jew and do not know it ??

We learn something everyday
even if it's not what we want to hear.
Anonymous Coward
User ID: 17674690
United States
01/23/2013 10:04 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
Anti Vortex

User ID: 32879842
United Kingdom
01/23/2013 10:04 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
There are DNA databases that might be able to answer your question about jewish heritage.

Sorry about the rest. Hang in there and get a good SSDI lawyer.
Brad Daylight

User ID: 1779676
United States
01/23/2013 10:05 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
hfpeacebump
"I have felt despair many times in my life, but I do not keep a chair for it."
~Dr. Clarissa Pinkola Estes

Today is a gift, that is why it is called "The Present"

“When an opponent declares, “I will not come over to your side,” I calmly say, “Your child belongs to us already… What are you? You will pass on. Your descendants, however, now stand in the new camp. In a short time they will know nothing else but this new community.”
- Adolph Hitler

Have a nice day, may God bless you :D
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 10:07 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


mine are.
also severe arthritis is a component
of HS. There is no known cure for HS.
And eventually if undetected and untreated
can be fatal. HS can lead to a host of other
ailments including colon cancer.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 10:11 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


mine are.
also severe arthritis is a component
of HS. There is no known cure for HS.
And eventually if undetected and untreated
can be fatal. HS can lead to a host of other
ailments including colon cancer.
 Quoting: Anonymous Coward 32908182


also another side effect of HS
is severe depression and suicidal
tendencies.
Valeria

User ID: 31362412
United States
01/23/2013 10:26 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
I also suffer from HS as does my sister. I saw 4 doctors before being sent to a dermatologist that immediately identified the disorder.

Ive never read anything that it traces back to jews in europe. HS came up in my disability hearing and only one part of my health issues. When I was working and had an outbreak, I had to take off work. As far as I know, its only my sister and I in our family.

Its a horrible, disfiguering, and dibilitating disorder but the good news is you can get outbreaks under (reasonable)control through diet and the type of clothing you wear. Other people choose surgery and one dermatologist wanted to 'kill' a gland in my body but I didnt choose that option.

Stress is also a factor, IMO.
Valeria

User ID: 31362412
United States
01/23/2013 10:28 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


I think it gets bad enough. Ive missed a lot of work because of this and severely affected my personal relationships.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 10:33 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
Ive missed a lot of work because of this and severely affected my personal relationships.
 Quoting: Valeria


you got that right !!!
Anonymous Coward (OP)
User ID: 32908182
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01/23/2013 10:35 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
HS came up in my disability hearing and only one part of my health issues.
 Quoting: Valeria


were you approved for SSDI due
to HS ???
Valeria

User ID: 31362412
United States
01/23/2013 10:42 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
HS came up in my disability hearing and only one part of my health issues.
 Quoting: Valeria


were you approved for SSDI due
to HS ???
 Quoting: Anonymous Coward 32908182


HS was only a part of the bigger picture. The ALJ did address the disorder specifically though. Where are you in your ssdi case?
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 10:43 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


Can Hidradenitis Suppurativa Qualify You For Disability Benefits

While some people with hidradenitis suppurativa have symptoms that are not debilitating and can be eased by things like frequent washing and use of an antibacterial medication, warm compresses, and making certain lifestyle changes, such as losing weight, other people with the impairment have disabling symptoms that do not respond to treatment.

If you have very severe symptoms, there are a few different ways you may be able to receive disability benefits: by meeting the requirements under the Social Security Administration’s (SSA) medical listing for hidradenitis suppurativa or a related disability that may occur along with hidradenitis suppurativa, by showing symptoms that medically "equal" a different listed impairment, or by showing your symptoms are so limiting there is no work you can do.
 Quoting: Source


[link to www.disabilitysecrets.com]

so yes you can qualify for disability with HS.
Anonymous Coward (OP)
User ID: 32908182
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01/23/2013 10:47 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
Where are you in your ssdi case?
 Quoting: Valeria


I was denied 2 yrs ago.

I just sent an e-mail to a SS Attorney
tonight for my 2nd try after being diagnosed
today.

and like you, I have other symptoms
along with the HS.
Valeria

User ID: 31362412
United States
01/23/2013 10:49 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


Can Hidradenitis Suppurativa Qualify You For Disability Benefits

While some people with hidradenitis suppurativa have symptoms that are not debilitating and can be eased by things like frequent washing and use of an antibacterial medication, warm compresses, and making certain lifestyle changes, such as losing weight, other people with the impairment have disabling symptoms that do not respond to treatment.

If you have very severe symptoms, there are a few different ways you may be able to receive disability benefits: by meeting the requirements under the Social Security Administration’s (SSA) medical listing for hidradenitis suppurativa or a related disability that may occur along with hidradenitis suppurativa, by showing symptoms that medically "equal" a different listed impairment, or by showing your symptoms are so limiting there is no work you can do.
 Quoting: Source


[link to www.disabilitysecrets.com]

so yes you can qualify for disability with HS.
 Quoting: Anonymous Coward 32908182


If your range of motion is impaired frequently by chronic outbreaks, cant sit, fatigued from not getting any rest from the pain, cant raise your arms out of pain or embarrassment - then yeah, its a real big fricken problem - and the ac who thinks it isnt all that bad doesnt have a clue.
Anonymous Coward
User ID: 252372
United States
01/23/2013 10:51 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
OP,

One of the links you provided mentioned Sephardic Jews, not Ashkenazi Jews. It also mentioned other people.

I also didn't see any mention of HS being akin to leprosy.
Valeria

User ID: 31362412
United States
01/23/2013 10:58 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
Where are you in your ssdi case?
 Quoting: Valeria


I was denied 2 yrs ago.

I just sent an e-mail to a SS Attorney
tonight for my 2nd try after being diagnosed
today.

and like you, I have other symptoms
along with the HS.
 Quoting: Anonymous Coward 32908182


Ive suffered from this more than half my life so if you need some helpful tips to manage leave an alternate contact. When I got denied, I filed an appeal but most ppl dont know or just give up.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:02 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
One of the links you provided mentioned Sephardic Jews, not Ashkenazi Jews. It also mentioned other people.
 Quoting: Anonymous Coward 252372


Sephardic Jews originated from Ashkenazi Jews bro ;)
there was a split at one time.

From the perspective of the present day, the first three sub-groups appeared to have developed as separate branches, each with its own traditions. Spanish and Portuguese congregations increasingly include Jews of other backgrounds, as descendants of Ashkenazim have migrated to those countries.
 Quoting: Source


[link to en.wikipedia.org]
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:04 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
When I got denied, I filed an appeal but most ppl dont know or just give up.
 Quoting: Valeria


my first lawyer did file an appeal
and had a hearing

still denied
sunshine4mealwayz

User ID: 2698905
United States
01/23/2013 11:12 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
The sores are not so bad that one would have to apply for disability.
 Quoting: Anonymous Coward 17674690


Do a search on Google Images for Hidradenitis suppurativa.Looks like hell to me.

I hope you can get your SSI op and hopefully find something to help your condition.
Valeria

User ID: 31362412
United States
01/23/2013 11:17 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
When I got denied, I filed an appeal but most ppl dont know or just give up.
 Quoting: Valeria


my first lawyer did file an appeal
and had a hearing

still denied
 Quoting: Anonymous Coward 32908182


I was denied with my first appeal. I filed a second appeal and had a hearing in front of an administrative law judge two years later and won my case.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:20 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
I hope you can get your SSI op and hopefully find something to help your condition.
 Quoting: sunshine4mealwayz


there is no cure.
the best hope you have
is treatments which can ease
your existence a lil.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:22 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
I was denied with my first appeal. I filed a second appeal and had a hearing in front of an administrative law judge two years later and won my case.
 Quoting: Valeria


I had a judge too,
still denied.

but at that point, I did not
have an MD stating that I had HS.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:26 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
Do a search on Google Images for Hidradenitis suppurativa. Looks like hell to me.
 Quoting: sunshine4mealwayz


here's ya a pic to see what it looks like.
if you have a weak stomach, I suggest
you don't click the link.

[link to www3.dermis.net]
Valeria

User ID: 31362412
United States
01/23/2013 11:26 PM

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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
I hope you can get your SSI op and hopefully find something to help your condition.
 Quoting: sunshine4mealwayz


there is no cure.
the best hope you have
is treatments which can ease
your existence a lil.
 Quoting: Anonymous Coward 32908182


In all the years Ive researched, I agree, there is no cure. Even if a person had the affected part surgically removed and replaced with skin graphs- it can still come back.
Anonymous Coward (OP)
User ID: 32908182
United States
01/23/2013 11:29 PM
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Re: I have been diagnosed with HS (Hidradenitis Suppurativa)
In all the years Ive researched, I agree, there is no cure. Even if a person had the affected part surgically removed and replaced with skin graphs- it can still come back.
 Quoting: Valeria


I concur

you have it for life

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