I'm going to succumb to the temptation of playing amateur physician and give readers a little advice that only a very few of you need. If you've got hidradenitis suppurtiva, see a dermatologist.
First, I need to explain what hidradenitis suppurtiva is, since if you already know that you have it, you're probably already seeing a dermatologist. Hidradenitis suppurtiva is a skin condition that causes severe recurrent boils in the arm pits and groin areas. It's extremely painful. It can absolutely be disabling. It's just a matter of how frequently you get the boils and how long they last. (No, thank goodness, I'm not talking from personal experience. I've just heard enough about it from my clients, including one I saw recently.) Most people who have hidradenitis suppurtiva don't get referred to a dermatologist because they don't get diagnosed. They keep going to general surgeons who keep treating the disease as a series of individual boils to be drained or excised rather than as a dermatological problem to be managed with medication. Almost every time I see a client with this problem I have to refer him or her to a dermatologist. Dermatologist do a better job of managing the problem than surgeons.
Your first impulse on considering this may be that a skin condition couldn't possibly be disabling. Your second impulse is probably that if a skin condition is disabling, it must be an awful disease to have. Your second impulse is the correct one. Hidradenitis suppurtiva is a really nasty skin problem. There are other really nasty disabling skin problems. You don't want to be on disability for any of them.
By the way, you might be surprised how often these cases come up before Social Security Administrative Law Judges. The incidence rate of this disease may be as high as 4% of the adult population so it's not rare. Statistically, it's almost a certainty that there will be at least on
reader of this blog who has an undiagnosed case of hidradenitis
suppurtiva. Of course, not everyone with hidradenitis suppurtiva is disabled by it. There are mild cases and there are severe cases. It's only the extremely severe cases that lead to disability claims.
And there is no cure for it.
ReplyDeleteI have a client on the west coast who has it diagnosed and has a supportive medical source statement attesting to the severity of it by the treating physician. The ME at the hearing stated that she did not believe that the condition was severe because the client did not seek treatment for every occurrence and the condition may resolve if she lost weight. (It should be noted the client was homeless and as the individual above state there is no cure)
ReplyDeleteI am still waiting on the decision but given the lack of understanding of this condition and that a lot of ALJ's blindly follow the opinions of experts even when there is contradicting evidence in the record, I am concerned.
It's in the Listings at 8.06.
ReplyDeleteReading Your blog for many years.
ReplyDeleteThank you for all the information.
I had this condition for more than 5 years.
It was so bad that employment was almost impossible.
Just about every week I had to go to the hospital
in order to drain my boils,operation after operation...,even got nickname at the hospital,"wing name" because every time i left operating room my arms were bandage to look like the airplane wings.Each event took 4-5 times of
going back to the hospital for post evaluation and drainage. I had multiple carbuncle heads full of puss
in armpits just about every other week. Face,nose,neck,groin area,back,back of the knee...
I tried just about everything to get rid of this.
The only thing that help me, was series of colonics
procedures in the course of 2 weeks that clear this once and for all.
Also change my diet,on the advice of practitioner.
This of course not an advice,but that how I was cured.
Extremely painful and debilitating condition.