Hi, my name is jameelk! — Scope | Disability forum
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Hi, my name is jameelk!

jameelk
jameelk Member Posts: 4 Listener
Hi, I’m Jameel, I’m a 42 Y/O man with stage 3 severe HS. It started around 3 years ago. I’m all the way up using weekly imraldi injections. After 4 months it’s not really helping. I’m now lost, feeling like I’m going to be in pain for the rest of my life. This also really impacts my mental health (Bipolar) any tips or tricks are welcome  

Comments

  • jameelk
    jameelk Member Posts: 4 Listener
    HS is Hidrenditus Suprativa 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @jameelk   Pleased to meet you.

    Thank you for joining and sharing. Sorry to hear your in pain.

    I am one of the team of Community Champions.  We support members help advise and give information.

    This is some information and support I can give you.

    Hidradenitis Suppurativa Support Group UK.

    https://www.hstrust.org

    Helpline 0300 123 0870

    Please if I can suggest also the following mental health charities.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    All offer advice floating support on mental health.  Plus health, benefits, welfare and anything else.

    Might not be in all areas.

    Please if you have any questions please ask me happy to be supportive.

    Offer compassion, empathy and sensitivity.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • jameelk
    jameelk Member Posts: 4 Listener
  • janer1967
    janer1967 Member Posts: 16,322 Disability Gamechanger
    @jameelk Hello and welcome to the community I am a community champion here at scop. I see Spiceman has given you some advice and other places you may get more advice. I just wanted to welcome you to the community I hope you can get the answers you need here
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @janer1967

    Good Afternoon & Welcome it’s great to meet you today.

    I am also one of the Community Champion’s here at Scope.

    I can see that my good friend @thespiceman has given you some great info/advice.

    Please please let me know if there’s anything else that I can help you with!!!!

    @steve51

  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Hi @jameelk - Welcome to the community from me too. I'm sorry to read you're suffering from such a painful disorder. I do hope thespiceman's link s prove helpful to you. I was also wondering if you've told your GP how badly this is affecting you, & if you've ever been referred to a dermatologist?
  • jameelk
    jameelk Member Posts: 4 Listener
    Thank you, yes I’ve been with the Dermatologist for a couple of years now. Along with the injections she just tried me on Metfomin (a diabetic drug, that can be used for HS) but that gave me lactic acidosis lol. It’s all not going very well haha. That’s why I thought I’d try talking about it. Next step will be to surgically remove the skin, but I have to get through the dreaded UC and PIP medicals ?  Thank you so much for replying, I really appreciate it! 

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