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Hi, my name is loulon80! I have Hidradenitis suppurativa. Does anyone else?

loulon80loulon80 Member Posts: 2 Listener
edited January 29 in Welcomes and introductions
Just wondering if anyone else is suffering from HS

Replies

  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi and welcome on board 

    Sorry I dint know I'd there is anyone with this but hopefully others will respond 

    Just wanted to say hi 
  • chiariedschiarieds Community Co-Production Group Posts: 9,222 Disability Gamechanger
    Hi @loulon80 - & welcome to the community. We had someone with Hidradenitis suppurativa join the community fairly recently, but I don't know if they're still here. We have had a few people with this join, so hopefully someone might see your post We also had this guest blog by someone that suffered HS a while ago: https://forum.scope.org.uk/discussion/59004/living-with-hidradenitis-suppurativa?
    Please let us know if you have any other questions, or if we can support you in any way. :)
  • Tori_ScopeTori_Scope Posts: 5,039

    Scope community team

    Welcome to the community @loulon80 :) How are you doing today?

    As chiarieds mentioned, we've had a few other users with HS on the community. Did you have any specific concerns or questions about the condition, or are you just looking to link up with people who can understand what you're going through? 
    Online Community Coordinator, she/her

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  • loulon80loulon80 Member Posts: 2 Listener
    @Tori_Scope thank you very much.. would be nice to speak with some people that are going through the same as me
  • krysrsrio2krysrsrio2 Member Posts: 4 Listener
    edited May 15

    Hi, @loulon80

    My name is Kryss and I want to come out here to help anyone suffering with this terrifying disease. Hidradenitis Supparativa has beeen the worst thing I ever experience in my life. How heartbreaking it is as a 14 year old  when you go to the doctor and the doctor tells you that they have no idea what it is that you have, so they refer you to a dermatologist and then the dermatologist don't know neither so she/he refers you to a surgeon to get it removed. My mom decided to stop going to the doctor because no one ever gave us an answer and it was just a waste of money. I was recommended to a surgeon but I ended up not doing the surgery because it wasn't guaranteed another boil won't grow, so as I got older I did more and more research to find out that I had HS. 

    I was horrified to know that I had this disease because they told me it was long term and that there was no cure. As a teenager I was bullied and terrified because I couldn't wear deodorant because if I did my boil will get worst since it was an open boil bleeding and pus coming out most of the time of the day. My mom use to tell me that it was only a boil and with a hot towel and draining the boil it will get better but once I did that the boil will flare up the next day again. I will cry everyday and I wanted to take my life, It was tiring at this point because the healing part was the hardest part; changing band aids, cleaning it, and constant bathing. This was a tough journey knowing that as a teenager you aren't able to play any sports because you have painful boils all over your body bleeding and pus coming out and your friends looking at you discussed at you. 

    After so many home remedies, antibiotics, pain, and suffering, I am 28 years old now and HS free for about 8 months now. I finally found someone that helped me and my sister who also had HS since 10 years old his website is [Removed by moderator - advertising link], He had HS all his life and he helped me fight HS and I am living my best life now. I am not afraid to get naked in front of my husband, I am not afraid to wear bikini, I am pain free, I don't have blood in my underwear, I don't have blood on my shirt. Also check out his youtube channel called ( HS relief ) where he gets deeper into HS. You are not alone.This is someone who suffered the same pain we have suffered. PLEASE CHECK HIM OUT HE HAS HELPED SO MANY OTHER PEOPLE WITH THIS SAME DISEASE AND HE CAN HELP YOU BE HS FREE TOO! YOU DON'T DESERVE TO LIVE WITH PAIN AND BE ASHAME OF YOUR OWN BODY, WE ALL MATTER AND DESERVE TO LIVE A HAPPY LIFE. GOOD LUCK AND MANY BLESSINGS TO YOU AND YOUR FAMILY. 

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