Hi, I have pvl and want to speak to others with it — Scope | Disability forum
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Hi, I have pvl and want to speak to others with it

Jack1
Jack1 Member Posts: 3 Listener
I have pvl and and in my early 20s  I find it annoying that I can't find people my age who also have this sure there are groups for people with cp but that's still different true lvl can cause cp or cp similar stuff but that's like talking to some one who has something similar but not the same and it gets a bit depressing and I would be nice to speak to others with it and see how it's affected them

Comments

  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hi Jack and welcome

    Hopefully some of our members will understand and be able to give you some advice

    CR
    Be all you can be, make  every day count. Namaste
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Jack1 welcome to the community.

    We have some information here about PVL and also at the bottom of the link there are other discussions people have started about PVL so you might like to have a look through.
    Scope
    Senior online community officer
  • Jack1
    Jack1 Member Posts: 3 Listener
    Thanks it hard to find prople with pvl not parent with young babies recently diagnosed sadly @Sam_Scope the discussions are all about young babies I can't find any by people with it which is a pain since I'd like to speak with anyone with it to see if we have similar problems but who knows someone on here might know.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    I will put a call out on twitter and let you know any responses @Jack1

    Scope
    Senior online community officer
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Jack1 how are you getting on? We didnt have anything come back through twitter Im afraid. I found a PVL group on facebook that you might like to have a look at?
    Scope
    Senior online community officer
  • Jack1
    Jack1 Member Posts: 3 Listener
    I'm fine thanks I'm already apart of that but it seems to be parents with new borns or very young children with it which always seems to be the case unfortunately but thanks for looking.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I understand the feeling of being so isolated from people with similar problems. I have a unique spinal issue which causes chronic pain. Time after time as soon as I start to say this someone will say "I have back problems too". Their problems are normally muscle related, crumbling spine or scoliosis. None of these are similar. Whilst I appreciate the effort it is like saying that a headache and a migraine are the same.

    In my case I know that people think their pain is the worst that pain can be but, if it were possible to swap pain levels, they would get a severe shock if they swapped with me. Yes, there are people worse off but they are few and far between, know the cause and hardly ever go out and about.

    Feeling like no one can ever understand and believe some of the outrageous statements that explain a person's normal life can leave you feeling isolated, alone and despairing of ever having someone who understands to talk to.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

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