hidradenitis suppurativa

24

Replies

  • I have had this disgusting condition for over 20 yrs now and really sympathise. I do get DLA for the condition, but also have another condition as well, so i dont know how a claim would go, but advise you to push for it.
    Send photos if you can and get any medical evidence.
    Good luck
  • strong96strong96 Forumite
    127 Posts
    i get dla, but got other problems too,
  • Those of you who do get DLA for the above condition, what rates are you on? i am trying to work out what i beleive i should be getting in relation to other sufferers.?
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  • I've had severe HS for a long time - over 20 years, but only recently found out about DLA. I put in a claim a couple of months ago and got the news today that I'm to receive the maximum award for both living allowance and mobility allowance.

    Whilst the HS is technically the only disease I have, it's so severe that it causes me many other problems, not least of all of course, severe reactive depression. All the problems I have as described in my DLA claim form though, spring from the HS.

    The thing to remember about DLA, is it's not really anything to do with the disease you've got, or disability - it's about how the problems you have affect your daily life.

    Many people with HS can't really justify a claim for DLA because they are able to lead a normal life. However, for some unfortunate people, such as myself, the HS is so severe that normal life is impossible.

    For me, surgery is no longer an option and they have exhausted all possible treatments. I manage to make it through each day only with the help of masses of pain killers, and oral morphine. Every day is a major struggle to keep going, and I can no longer manage without daily help. I imagine that's why my claim was granted, and at the maximum levels.
  • savagejsavagej Forumite
    1.2K Posts
    I would google it and oral isotretinoin (or accutane/roaccutane) I am pretty sure they will try that as a last measure. Mind you the side effects are not pleasant but I imagine not half as bad as the condition.
  • They tried me on massive doses of roaccutane about 15 years ago, for about 6 months. The side effects, as you say, are awful. For me, it had no positive effect at all.
  • DaziDazi Forumite
    1.4K Posts
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    I too have HS, in the groin area. I reckon I have had it for about 20 years but was only diagnosed this year. Over the years Drs have said 'have you got any knickers from a jumble sale' :confused: and 'make sure you wash properly':eek:

    It flared up really bad earlier this year and I sat in the Drs and cried and cried, I had got to the stage when walking home from work took me twice as long and each step had me in tears with the pain - I spent my whole time with a dressing stuffed up my knicker leg, she sent me for drainage but was told not appropriate, had to then go through all the referral procedures to have it cut out. Had this done in May and its back, not as bad, just lumpy and weepy at times, also the other side has come up again too, luckily just lumpy, not weeping. I do take a lot of painkillers though.

    when I went to our local hospital to have the stitches out, none of the nurses had ever heard of it, I told them to google channel 4s embarassing illnesses.

    Although I hate having it, I am glad I finally know what it is!
    whoever said laughter was the best medicine has clearly never tasted wine

    Stopped smoking 20:30 28/09/11 :D
  • mmikailianmmikailian Forumite
    335 Posts
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    I am surpised so many people have this condition i thought i was the only one! have had it roughly 7 years mainly in the groin area.....ugly scarring never going down completely, no one understands how painful it can be at times.....

    Given up with the DRs and Hospitals I had tried everything and no change. I would say that i notice it more when i am stressed do others?
  • Stress is definitely a trigger for it. No question. I always have many more flare ups when I'm stressed.

    My HS has destroyed both sides of my groin, perinium, inside my buttocks, my upper right thigh, both sides of my chest and arm pits on both sides. As for surgical interventions of various types, I stopped counting them years ago. Certainly 30+. Everywhere that was excised, it has come back with with a vengeance. Unfortunately, as I mentioned in a previous post, it's now inoperable. They can't help me without making other problems worse, and the main fear is that my skin will either not heal at all - or that they will trigger it into spreading faster.

    One of the unfairest things about this disease can be that when your fully dressed and trying to go about daily life - no one would ever know how much pain your in. When you're dressed - no one would know there's anything wrong at all. Even the people that do know whats going on, simply could not imagine how bad the pain can be. I find this makes me feel isolated and alone, and I'm sure many others must feel that too? It's also embarrassing of course, so you're not inclined to talk about it, but rather to try to hide it.

    For years I wouldn't go on holiday to hot places - I had nightmares about the thought of beach holidays, because I couldn't bring myself to take my top off to go swimming or sun bath. I couldn't stand the thought of people starring at me and seeing how horribley scarred I am. Thankfully, I got over this issue in my mind a few years back, and now I don't care if people stare or even ask questions. I do notice some people moving away from me, and not wanting to get too close - but I don't care anymore. You've got to enjoy life as much as you can, whenever you can.

    I can tell you that whenever I go on holiday to somewhere hot and I spend lots of time in either the see, or a pool, the HS improves dramatically. If I only do the sun bathing, there's less of an improvement - but still an improvement.

    I'm sure the complete lack of stress whilst on holiday is a factor too though.
  • I really do sympathise with you. HS is a truly disgusting disease and the medical profession dont seem to know alot about it, if anything.
    I have now had it for over 25 yrs and nothing works, not pills, potions or surgery. I agree, the problem is that nobody knows just how much pain you are suffering and I also get very depressed as well.
    Wishing you all a pain free new year.
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