Systemic scleroderma??

[Sami1982]

OK so today I received a follow up letter from my last 6 month review where I mentioned I'd had a bad chest for some months now and a cough I just cannot shake. My specialist said it could do with me smoking (I smoke like 3/4 tabs a day) but it's only been since I was ill earlier this year.

So my letter suggested that I now have a presence of a new autoantibody called Scl-70, and upon consulting my friend Google this isn't a good thing and they say we'll discuss this in our next review in December but I'm worried my chest has been this way for months and wonder if it should be more urgent? II know it's manageable and only fatal with patients with bad organ issues but still??

Needles to say I've stopped smoking and looks like I'll have to cut out alot of sugar which pretty much keeps me going from day to day with the chronic fatigue.

Anyone have this that can put my mind at ease??

[Roarah]

My uncle, who is now in his mid 70s has scleroderma and contrary to the ten year from diagnosis survival rate posted on Google, he had heart, lung and kidney involvement and was very seriously ill in his early 60s but since is presently doing really well.

Google is always quite a few years out of date in many medical studies so please try not to believe the worst. Your team is not too concerned with your numbers or worried that you might have any organ involvement or you would have been rushed in.

Try and relax for now and do quit smoking. Xo

[Hidden]

I agree with Roarah. I have known 4 older people with Scleroderma and all have survived my non -diagnosed -with -autoimmune parents by at least a decade. One was a GP and got Scleroderma diagnosed in his 20s, quit his job by his 30s and then lived to be 86 - I always met him out walking with his goggle shades and summer gloves.

Quitting smoking is the thing! Best of luck with this. 😊

[overnighthearingloss]

I was diagnosed with scleroderma in 2009 when I had a scleroderma renal crisis. My kidneys have since stabilised and actually recovered some function and although I have had my share of chest/lung complaints i have never had to have oxygen away from hospital and i am not expecting imminent death.

I think it's best not to dwell on what ifs. Nobody knows what their future holds. Just pace yourself and aim to be as healthy as you can be with the challenges. Besides as time advances the professionals and you yourself will get more knowledge as to what best treatments are.