Is anyone under 40 using Nippy night time non invasive ventilation with oxygen and constant oxygen during the day

my daughter is trying to cope with severe lung damage caused by Sarcoidosis and day to day living on oxygen and night time ventilation - I think it would be helpful if she could communicate with someone nearer her age who is experiencing similar health problems.

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  • LynLouisa

    I am sorry to hear your daughter is trying to cope with severe lung damage.

    My problem is asthma, so not similar to your daughter, but I just wanted to say hello.

    I've also read that the most common age for sarcoidosis is 20-40 so hopefully there will be other people of her age.

    koala x

  • I just wanted to say hi LynLouisa because I care for my hubby who has had sarcoidosis for 22 years. He has lung and airway damage but is not as bad as your poor daughter. Is she under a specialist? I really do hope that she can find someone near her age to chat to. Maybe try SILA which is a sarcoid site online. It costs a small amount to join but could be very beneficial. Good luck. xxxxxxxxxx

  • Hi, I was diagnosed with Sarcoidosis last year. It is in my lungs and I am on oxygen when active but not at rest or at night so I am not as bad as your daughter. I am also 60 but just wanted to say hello. There are not that many people on this site with our condition. You may find it better to try the SILA site sarcoidosis.ning.com/

    Paul x

  • Hiya Lynn I'm a 42 mum of 3 with severe copd I'm on negs 4x daily really restricted breathing in pain constantly n been told on Friday that the eLasticity in my lungs is starting to stiffen its my kids that's the worry for me but I just take one day at a time take the good with the bad n the happy with the sad and may I add I cannot get any benefit of any kind I've been declined 3 times for DLA my son has to take leave from college on my really bad days its bad enough havin to suffer this debilitating disease but when ur only half way through your expected life span its so sad love to your brave daughter.xx wendy

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