Needing advice/ helpful tips please!

lms1208
lms1208 Online Community Member Posts: 3 Listener
in Everyday life
Hello all! 
Let me introduce myself, my name is Laura. I’m new to this site and greatful for it! 
I’ve been suffering from a mystery skin issue for over a year now until FINALLY last week , received a diagnosis of Lichen simplex Chronicus/ Lichen Sclerous. 
Does anyone else suffer the same thing? The areas I’m affected is my scalp (I have bald spots) my hands , fingertips , especially around my cuticles (extremely painful. Inside my nose(?!) 
Advice PLEASE!

Comments

  • christian96
    christian96 Posts: 101 Contributor
    Hello and welcome @lms1208!
  • Richard_Scope
    Richard_Scope Posts: 3,848 Cerebral Palsy Network
    Hi @lms1208
    Welcome to the community. I'm really pleased to read that you now have a diagnosis for your skin condition. I have found some information from British Association of Dermatologists, that might be useful for you.
    Lichen Sclerosus
    Lichen Simplex
    I hope that is of some help?
  • lms1208
    lms1208 Online Community Member Posts: 3 Listener
    It does! Thank you!
    I was more or less hoping to find others who have been through it too
  • Richard_Scope
    Richard_Scope Posts: 3,848 Cerebral Palsy Network
    I'm sure some of our community members will be able to share their experiences.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community @lms1208, great to have you with us!
  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi and welcome I haven't seen anyone on here mention this condition but that doesnt mean there isnt anyone

    Just wanted to say hi
  • lms1208
    lms1208 Online Community Member Posts: 3 Listener
    Hello! And thank you for the the warm welcome!
    From what little I can find online, it’s a rare disorder / gets mistaken and misdiagnosed A Lot . They were only able to diagnose me because after I had to keep going in saying”this isn’t working! Look what’s happening now!” And they finally did a biopsy. 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    This must have been really stressful @lms1208! I hope a diagnosis has allowed you to get the answers you wanted.
  • Adrian_Scope
    Adrian_Scope Posts: 11,892 Online Community Programme Lead
    Hi @lms1208 and welcome to the community.
    As you can say - LSC is quite a rare condition and unfortunately not one we come across a great deal here, but members such as @Romaine, @karrie, @OutOfTheWorld99, @jake4dsm and @kate35 have all reported living with Lichen sclerosus.
    I hope someone else will come forward with their experiences though and in the meantime you're more than welcome here. :smile:

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