Progressive sarcoidosis: Hi everyone... - British Lung Foun...

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Progressive sarcoidosis

limbobimbo
limbobimbo
14 Replies

Hi everyone,

Hope you're all well, can anyone tell me what progressive sarcoidosis means. I'm getting increasingly anxious as I've been burying my head in the sand but the events of the past week have made me think I might be worse than I care to admit.

Thanks in anticipation Liz

14 Replies
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Jo_BLFHelpline
Jo_BLFHelplineBritish Lung Foundation

Hi limbobimbo

Usually Sarcoidosis is acute or chronic - so either a short illness which may or may not require treatment or chronic which is long term.

Are your symptoms getting worse and what events leave you thinking you are worse than you are admitting?

If you give us a call we can arrange for you to speak to one of our respiratory nurses - 03000 030 555.

Cheers

Jo

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limbobimbo

Thanks Jo I will do

Liz

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phillips1

Hi Liz

I noticed that you hadn't had many replies. I also noticed that the BLF survey shows that only 2% of the members have Sarcoidosis. That probably explains the lack of replies but it also means that you are very special. Keep your chin up. Love from Bobby xx

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limbobimbo

Bobby thanks sooo much for that!

Liz xx

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Hidden
HiddenAdministrator
in reply to limbobimbo

There may be only 2% with sarcoidosis but that's still 6 people and the more the six of you start chatting to each other, the greater chance that more people with sarcoidosis find their way here - and soon that 6 will grow and grow - and soon ther may be 20 or 30 - and just think how much support 20 people can give each other!

So start a blog about sarcoidosis and let's see where it goes.

Mark

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limbobimbo
limbobimbo
in reply to Hidden

Thanks Mark.

Liz

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Hidden
Hidden

Hi Liz

I'm one of the 2% on here that suffer. I've not heard the term 'progressive' but I think it's probably as Jo says. For some of us this illness will be with us forever along with the medication. I'm not sure if I've got acute or chronic but it my consultant seems to think its burned itself out but my ACE levels are still tested and I'm still on immunosuppressants. It's a horrible disease but I do think its manageable. Then again I sometimes think I'm one of the lucky ones despite the state of my lungs. Sorry I can't be of more help.

Marie x

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limbobimbo
limbobimbo
in reply to Hidden

Thanks Marie

Liz x

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nuttiella

Hi Liz,

I'm not sure what Progressive Sarcoidosis is either. I presume it's another way of saying Chronic Sarcoidosis? It's just a guess.

I also have Pulmonary & Cutaneous Sarcoidosis. I was diagnosed in 2009.

If you're worried, have a word with your consultant, or in the meantime give the BLF a call.

Keep positive!

Ells x

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limbobimbo

Thanks Ells

Liz

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LuckyGirl

The complication of Bronchiectasis with chronic Sarcoidosis is quite common establishing the condition reducing physical ability with the consultant familiar with the case using clinical symptoms would be my advice. Some research on bronchiectasis complicating pulmonary sarcoidosis ncbi.nlm.nih.gov/pubmed/121...

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limbobimbo

Thanks LuckyGirl

Lliz

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sassy59

Hi Liz, you are indeed special as is my husband Pete who has had sarc for 22 years now. He is chronic (in more ways than one!) but manages to keep as well as he can and be very positive in his outlook. He is on lots of medication but just gets on with things. He also has copd amongst other things but I care for him and try to keep him well. You take care and stay positive. Thinking of you. xxxx

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limbobimbo
limbobimbo
in reply to sassy59

Hi sassy59,

Thanks for that !

Liz xxx

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