Hello all,
Currently on my second stint acting as a single parent for toddler twins and three step kids, due to my fiance being back in hospital (2nd time) due to neurosarcoidosis.
Just curious to see if anyone else on here has been or had relatives affected by this condition?
Have a look on wikipedia for more info if you’re curious as to what it is as it’s quite rare.
Cheers people

my mum had sarcoidosis in her brain and lungs when we were kids..

she used to be quite often either out of breath or out of it – thus making it easier to run rings around her..

she doesn’t suffer with it now and is pretty fit and healthy for her age..

that’s all I can tell you

Hi Darren, in my previous life as a nurse I cared for people with Sarcoidosis. It is a chronic inflammatory condition with no known cure and has various degrees of severity and symptoms.

I saw people affected both midly and severely, predominantly with their breathing.

I honestly think you’re best speaking to a specialist rather than hearing worse case scenarios on a forum.

Best of luck

Thanks guys, Ben, we’ve had best and worst case scenarios already!
I was just casting a line out to see if anyone on here knew of it.
Thanks for the replies chaps

Hi Darren, I now work for a company that make non invasive ventilators (breathing machines) and while I mention Sarcoidosis, as a restrictive breathing condition, when I do teachings, in reality hardly any of the clinicians I come in to contact with ever mention very severe cases.

I’ve pulled a text book out and it says “In general, sarcoidosis appears briefly and heals naturally in 60%-70% of the cases, often without the patient knowing or doing anything about it. From 20%-30% of sarcoidosis patients are left with some permanent lung damage. In 10%-15% of the patients, sarcoidosis can become chronic”, I know alot of that doesn’t sound great but the difficulty for clinicians in givng any clear information with regards to inflammatory conditions is that they flare up and receed, even in chronic cases there will be good periods.

There is alot of evidence to show Omega 3 oils have strong anti inflammatory properties so its worth looking into.

Ben, thanks a lot for the advice.
I’ll let my fiancé know about what you’ve said.
She’s going down to Bristol for more tests ( cameras into her lungs through her ribs!)
She’s affected in her lungs, brain and spine by the way.
The doctors have said they’ll treat her with steroids when they’ve definitely decided its neurosarcoidosis.
Cheers again, hopefully I’ll be able to update with good news when she’s on the mend.