Undiagnosed and rare conditions
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Cop/boop.

Audinut70Audinut70 Member Posts: 122 Pioneering
Hi, im mark, i have a rare lung disease called Chryptogenic organising pneumonia, Ive had it for about 5 years now, just curious if anyone here has it ir knows of anyone, i suspect it was from my previous job, working in plant/boiler rooms in a university, sweeping, mopping and painting the floors. My only ppe was a paper face mask. Any advice, replies will be appreciated. 

Replies

  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi and welcome 

    I have not heard of your condition or heard anyone here mention it 

    You are most welcome tho and hope others have some more insight 

    Feel free to have a look around and join in or ask any questions 
  • Cher_ScopeCher_Scope Posts: 4,071

    Scope community team

    Hi @Audinut70

    Your condition is a new one on me too and I'm unfortunately not able to find any other Scope members with COP or BOOP (they may be lurking though!).  One good space to potentially get support is the British Lung Foundation.  Their contact page says they have a helpline and localised support groups, while they also have an information page about COP. 

    Are you currently under the care of a medical team or your GP in terms of treatment?  And, how are you coping with the symptoms?
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  • Audinut70Audinut70 Member Posts: 122 Pioneering
    I still see my consultant, blf put me on to a forum, but thats not available anymore, it was the only one i could find,it only had 400+ members, worldwide. I have to explain it to nurses and doctors when i have to stay in hospital with relapses. 
  • Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
    Hi Audinit70
    I know exactly what you’re talking about.  My husband had Cop/Boop 5 years ago. It literally came out of nowhere. We were on holiday in Turkey in 30 degrees.  I was loving it in my swimwear, buy my husband was freezing. He was physically shaking with the cold. He wore jumpers all through the holiday and we even had to ask for blankets at night.  When we came home, he collapsed.  GP thought it was a chest infection, then pneumonia, and then 2 months later on being referred to a specialist. Cop was diagnosed.  My understanding is that there is no rhyme or reason, why it occurs and it is quite rare. About 1 in 15000 people get it.  
    My husband was given steroids, which he took for 3 years.  It certainly took its toll in it aged him and diminished his strength.  My husband has recovered but when Covid arrived, we were terrified.  Cross fingers, so far he’s ok.
  • Audinut70Audinut70 Member Posts: 122 Pioneering
    Ive just finished my prednisolone steroids after 5 years, I'm still on mmf, amongst other medications. I needed 10 sessions of chemo after the first year,  i lost all my muscles and strength. My skin is so thin,if i rub past a corner of a door or the like ,it just peels my skin off. Being a mechanic, my arms are covered in scars, i refused to let it stop me,well, until it did. I still struggle for breath at times. I know some people can remit early, but there's always the chance of a relapse.
    I hope your husband is better now. This is one of those invisible diseases that wipe you out. Trying to explain to people that your not lazy is a nightmare. 
  • Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
    Hi Audinut70.
    Thank you, yes my husband is well now.  From what say and been through my husband only had a mild case in comparison, although it did not seem like that at the time. As people believing that your lazy, they haven’t got a clue and not worth worrying about, but I know what you mean, it’s very frustrating.  Keep well and take care.
  • Audinut70Audinut70 Member Posts: 122 Pioneering
    Thanks, but just so people know, this is a soul destroying disease, however mild. 
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