Are we gonna Die of HS?

Posted , 8 users are following.

been a Hs patient for last 5 years. it isnt that severe as i read about other patients.

my only question is are we gonna die of it? how long do you love with Hs?

THANKS

1 like, 11 replies

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11 Replies

  • Posted

    Hi there. I have a positive message to share.

    I'm a 36 year old woman. Have had HS since 1998.

    Started homeopathy in 2012 (after all else had failed (including multiple surgeries, steroids, antibiotics etc.)

    In remission since 2017. So if after 15yrs, I shifted to holistic medicine (homeopathy), changed my mindset and lifestyle.. and have experienced remission....there is hope for sure. 😃

    Stay positive and strong. HS is a tough one. But don't lose hope. All will be well. Good luck. 😃

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  • Posted

    Hi Chitra, I read your linked post, thank you. Are you willing to share details of the homeopathic methods that worked for you? Diet? Did you find you had trigger foods for examplease? Are there any supplements you use that are helping, etc? Thanks in advance for any detailed info you are willing to share! Kathy

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    • Posted

      Hi Kathy.

      Pleasure.

      I have replied to the user rocky82109 in that post, pertaining to diet/food triggers. Please search for the following sentence:

      "Regarding diet, as I have mentioned earlier, diet has played only a secondary role in my recovery"

      Also, throughout the post, I have given more detail about homeopathy, it's principal, the lifestyle changes, my practitioner's approach etc. Could you please go though the replies that have been given to forum users, throughout that post? Information is scattered all over, but you should find answers to most of your questions there. Anything after that, feel free to get back 😃

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  • Posted

    Hi FahdZ

    No, it's unlikely no matter what age you are, that you will die of HS.

    I asked this same question when first experiencing it last year and, within a few months was diagnosed correctly by my GP. I'm 59 and an age where I shouldn't have got HS at all according to all the stuff written about it.

    HS isn't really known about. What causes it is still not clear. Who gets it is still not clear. Why someone gets it is also still not clear. There's a suggestion that it's an autoimmune disease but even that isn't supported by evidence. There's theories it's hormone related, but even that isn't really substantiated. Now there's suggestions it's to do with your micobiome i.e. the bacteria living in your gut.

    There are lots of theories out there but not enough money is put into HS to truly understand about it.

    However, there are a lot of people on this site with experience of it who have been doing their own research as they are suffering from it, and some have found links to food etc, and have had success in getting HS to go into remission. Some people are using vitamin supplements and have found success. A consultant mentioned to me that Zinc + Vitamin C will help alleviate the condition (please note not cure it). And others on this site have suggested Tumeric which is a natural anti-inflammatory.

    I used Tumeric tablets from a local vitamin store for one month because of this site and although it hasn't cured it - I don't get the pain I used to which got to the point where I couldn't actually walk or sit without pain.

    I started taking Vitamin C+Zinc, for a month separate from the Tumeric. I have tunnel abcesses in the groin - so not nice! But after 3 months they started to heal having been open wounds and leaking all the time.

    So then I stopped taking all suppliments and guess what - it's all now back to how it was when I was first diagnosed - but not the pain.

    All I know is that I'm going back to taking Vit-c + zinc and tumeric to help alleviate but not cure the problem and eat porridge just in case the microbiome is an issue.

    If you google this condition and look at the white papers that the medics provide - there's loads out there as the medical profession is all about sharing info - and that's a really good thing - you'll get the impression that they know this condition exists and there are some fabulous people out there who range from those doing research at a molecular level to consultants working with patients and they're trying with limited funding to understand what's going on with HS.

    And, if you google hard enough and read enough white papers you will find someone - and I mean just one person, who did die of HS age 70 plus but that was as a result of sepsis in another area of their body which just spread to the area of HS which took a hold.

    We're all made up of bacteria. And it seems that HS is a bacteria that's just gotten hold of our immune systems and playing around with it. Mostly we co-exist with it. Sometimes it flares up - annoys us - causes us flare ups and to be in pain. Then it sometimes goes away for years at a time.

    Follow those on this site as they are basically using their bodies as an experiement outside of medical experiments to understand what this thing is in the hope of curing it one day.

    There's so many of us with HS throughout the world! It's not a condition limited to a particular demographic. That's something the HS scientists are aware of and are looking at.

    So my take away for you on this is, yes you've got it, yes you've got to manage it, no you won't die from it, yes it's rubbish to have and yes, you'll have to do your own personal research using your own body to find out what works and doesn't work for you and you'll need to work with websites such as this to find the answers from people who are fabulous and happy to share their experiences.

    You aren't alone. There's loads of us out there. Take comfort in that.

    And, we're all living our lives whilst having to manage this condition and are refusing to let it define us! We're living life on our own terms! And by the way, when I first got diagnosed and I could barely walk from one room to another, I contacted my employer and insisted I worked from home for 4 weeks whilst I got to understand what this was for me. Hopefully you and others have employers who will help you get a balance on this.

    All the best to you.

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  • Posted

    i have had hs for 10 plus years. i have never had any surgeries just depending on the location i either tough it out or take antibiotics. I have the same question is this going to my death illness. i am 56 female and with each outbreak i spiral mentally. i document with pictures for medical purposes on my phone. i am in the middle of an outbreak now cannot work during this outbreak as it a giant one top of my upper thigh. i am interested in the zinc and will read today. i also have fybromalgia and big fat case of PTSD. I have nobody to talk to so happy to find this forurom.

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