Achenbach Syndrome — Scope | Disability forum
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Achenbach Syndrome

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Zimba
Zimba Community member Posts: 1,873 Pioneering
Apologies, I didn’t realise I posted this on someone else thread.
Diagnosed with Achenbach Syndrome presents on my hands and toes, starts with a burning heat that itches and feels like I’ve been stung then a bruise appears which can last from 4 hours to 3 days. Told by consultant not a lot known about it, there’s no treatment and it’s not life threatening, just unsightly.

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  • Rosie_Scope
    Rosie_Scope Posts: 2,240 Scope online community team
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    Hi @Zimba, that doesn't sound fun. I've not heard of Achenbach Syndrome before, but I'll read up about it.

    I know you said your consultant said there's no treatment, but they offer you any advice about managing it? Have you found anything has been helpful so far?
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Zimba
    Zimba Community member Posts: 1,873 Pioneering
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    @Rosie_Scope

    They didn’t say a whole lot about it to be honest. When I was out at the 80s night on Saturday, I clapped my hands maybe a little to much after the band played and it occurred then, I just run my hand under cold water to cool it down and take away the stingy feeling, sometimes I get a bit of swelling with it.  When I went to the see the consultant I had taken a series of photos which showed a timeline of  changes that take place which was helpful for them to diagnose. I think if I’d have gone without evidence it would have been hard for them to diagnose. 
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @Zimba - please don't worry about posting on a thread, & great you've worked out to make a post of your own anyway.
    I hadn't heard of Achenbach syndrome either, & it does seem to be either very rare or not be picked up on as often as it should!
    I'm sure it's not much fun, but well done for you in documenting the changes that recently happened so a diagnosis could then be made. There's some info here if you haven't already come across it: https://www.healthline.com/health/achenbach-syndrome#complications

  • Rosie_Scope
    Rosie_Scope Posts: 2,240 Scope online community team
    edited March 5
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    @Zimba, It's great that you were able to finally get a diagnosis for it. As you say, it sounds like it's quite a rare and misunderstood condition, but even though it's tough to live with I hope that at least knowing what it is and that it's not life threatening is a little bit comforting :)
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Zimba
    Zimba Community member Posts: 1,873 Pioneering
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    @chiarieds Thank you for the link, I have done some research on it, there’s not a whole lot out there but maybe this thread might help others. You’re right It’s not fun at times and  can be painful but I don’t let it stop me doing anything, just another curveball in life to work with 🙂. Thank you for the reply 

    @Rosie_Scope
    Yes it is a comfort to know it’s not life threatening just wish I knew why it chose me 🙂, at first I thought it might be something to do with my veins as they protrude when an attack happens in the area affected and I still get a bit freaked out when it happens but you know it could be a whole lot worse. Thank you for your reply. 

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