Does anyone have stage IV pulmonary s... - Lung Conditions C...
Does anyone have stage IV pulmonary sarcoidosis is under 40 and using oxygen and night time Nippy ventilation?
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Hi I have pulmonary sarcoidosis but no idea what stage I am at. I also don't have the other things you mention, sorry. I'm 42 - was diagnosed at 40.
You might want to give the helpline a ring if you have questions.
Marie x
Hi I tick two of those boxes, I am IV chronic with lung and neural Sarcoidosis using oxygen twenty four seven with no ventilation yet fingers crossed.
Any questions welcome had it almost seven years which is long enough when talking with experts in their fields, that a little wisdom is gained.
Joyce
It is my daughter who suffers from this terrible condition - she is only 33, was diagnosed when she was 15 but they think she had it much earlier as doctors misdiagnosed her shortness of breath as asthma. She also has Chrohns and type 1 diabetes and now has a feeding tube in her stomach for overnight feeding in addition to normal intake during the day because she cannot maintain a reasonable BMI.. She is on long term steroids and anti TNF drugs now. She lost her job due to her health 3 years ago and was crushed by this at the time. She is a fighter but the constant daily battle is wearing her down emotionally and physically and she just wants to lead as normal a life as possible and enjoy herself - she has friends but they have their own family lives and she does feel very isolated. How do you manage day to day, do you get any counseling support or support network (apart from medical intervention) from anywhere - do you have any links that may help? Have not rung the BLF support line yet as not sure what they could offer.
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