COPD

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Audinut70
Audinut70 Community member Posts: 133 Empowering
edited August 2019 in Everyday life
I would like to thank everyone for the help I will possibly need, and hope that I can help others, I have a rare lung disease called COP, alongside anxiety and depression and mild paranoia. 
COP is cryptogenic organising pneumonia, and is a nightmare disease. It is treatable but not yet curable. 

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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,528 Championing
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    Welcome to the community @Audinut70, it's great to have you here!
  • Ami2301
    Ami2301 Community member Posts: 7,893 Championing
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    Hi @Audinut70 welcome to the community! I've not heard of COP before, would you mind telling us a bit more about it? :)
  • Audinut70
    Audinut70 Community member Posts: 133 Empowering
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    Thanks for the swift reply. 
    COP is a lung disease which is attacked by the immune system, finding why is the problem with this disease. I have had 3 bronchoscopies and 5 biopsies but still cannot find what my immune system is attacking. 
    It leaves you feeling fatigued and constantly tired with no energy, the easiest of tasks is now almost impossible for me, I get out of breath very quickly. 
    Waking up is not very nice either, pain and fatigue means I sometimes can not get up. 
    Then there is the medication,too many to list, but all affect my muscle, which has deteriorated vastly, skin so thin I can not scratch without it peelings off to flesh. I could go on forever but hope it gives a general idea. 
    I will say that changing gp's is a nightmare as very few have heard of it. 
  • Ails
    Ails Community member Posts: 2,240 Championing
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    Hi @Audinut70 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm sorry to hear of your health struggles, but you have come to the right place for support and to meet new friends.  I hope you enjoy your time on the Community.  If there is anything we can help/support you with then please just ask.  All the best.  :smile:
  • Audinut70
    Audinut70 Community member Posts: 133 Empowering
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    I have a link to the only forum for cop if it is helpful to anyone. 
    cop_boop-subscribe@yahoogroups.com. It is a free forum, you just need to register but it is a specific forum for cop sufferers. I hope it is helpful to anyone. 
  • Ails
    Ails Community member Posts: 2,240 Championing
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    Many thanks for that, @Audinut70.  I'm sure members will find the link helpful.  :smile:
  • steve51
    steve51 Community member Posts: 7,141 Championing
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    Hi @Audinut70

    Good Morning & Welcome to our Community/Family.

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

    Yes I have also got a 
    rare health condition.

    I can also relate to your post.

    I do hope that you have got a good start to your day ????

    @steve51
  • Audinut70
    Audinut70 Community member Posts: 133 Empowering
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    Some are better than others, I have had 3 years to get used to it, thanks anyway