I do so agree with your feelings about this horrific condition – and sometimes the effort to retain a normal appearance is just too much – and I am living on my own, family some distance away, and although friends are very good, they just can’t understand the change this condition forces on you. We can only hope for some good news, and I wish you well.

Hold on to that positive spirit – we can all benefit from that attitude. Yes it is a life changing and debilitating condition, but medical science moves ever forward and we must keep hoping for better,

stay safe,

I do agree – it would at least give hope where is very little at present. The Covid drugs are a good example – they were devised and circulated and taken up by multi millions of people – surely with AI this can be considered earlier?

I do not know anything about this therapy in the UK. Can someone please tell me what is involved? It does sound very interesting and I am prepared to try anything.

So this is very interesting and may be of considerable help to others. It is important that we share our experiences on this Forum – I certainly value the input from everyone and am learning all the time – having only been diagnosed in May this year. A challenging situation to say the least!

I send you my best wishes and hope things will improve for your husband.,

It has been so helpful reading experiences of other patients, so far I am not being prescribed anything at all, but simply monitored. Trying to stay as active as possible and doing breathing exercises. It is a challenging condition to cope with and in the UK we are not…

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Is this another name or a different drug altogether?
It is a reason to hope

It’s so useful to read these comments – diagnosed 6 weeks ago and wondering exactly what lies ahead,  not a happy prospect obviously but not without hope either and will try anything I am prescribed, even if the side effects are unpleasant.,  not exactly how I planned to live my final years, but will keep hoping.