Now hold on a minute who said you're going to drop dead?! Sure systemic scleroderma can be life threatening and life limiting, yes some people crash and burn quickly, some after 10 years, some after 20 some after 30 and more, no one here can tell you which one you will be. The quicker you are diagnosed and treated the better your chances. Jo Frowde recovered from pulmonary fibrosis thanks to quick diagnosis and treatment (and being very healthy at the time) but I also know people with pulmonary fibrosis who are on oxygen 24/7 as a result.
In 2010 I was diagnosed with myocardial fibrosis (scleroderma hardened area of heart muscle) and had an ejection fraction (measures how well the heart pumps blood around the body) of 32%, normal is 55% and the year before it had been 50%. My life expectancy was around 2 years at that time but thanks to implantation of a biventricular ICD my ejection fraction is now 55%. My dear friend (described by medical professionals as having the worse case of scleroderma) spent her first holiday with us and we thought it would be her last, this year will be her third with us provided she accepts our invitation again of course! As above Jo recovered and her life is much the same as it was although different...make sense?
Whether you marry and have kids is something you have to decide. For 20+ years I have been with my beloved, married to the man of my dreams, he's older and I always thought he would retire down to working a few days a week (not the type to stop work completely) and I would work full time but as it happens I retired at 40 due to ill health and my husband is now my carer. Not what we expected but we are more in love than ever and many healthy couples can't say that, everything is different but we have made it better, we determined to make the most of it. That's all you can do whatever life you have and let's face it no one knows what's down the road, perfectly healthy people marry, have kids and hey presto disaster strikes! Disaster, whatever guise it comes in, only brings out what is already there in the relationship, if it's bad that comes to the surface and people split, if it's good that comes to the surface and people don't.
Now I can't deny that sclerodemra has taken more that its fare share from me, good health, control over body, mobility, career, ability to work, independence, the future I expected, the time I expected (people with heart involvement can have a shorter lifespan) but it has given me as well, the people I have met through having this disease have brought joy, hope, hilarity and purpose into my life. My husband and I are aware of what we have, so often we just drift through life, we worry about work, let me tell you nothing I ever worried about at work was worth the effort!
Have a look at our emotional adjustment video (by yours truly) because we can help ourselves, it's not about giving up and letting the disease trample us underfoot. Yes grieve your losses but then move on! Wallow and get whalloped! Eat well, rest well, manage stress, these are things we can do and by doing what we can we gain some control over what's happening to us.
There's still good life to be had after scleroderma, it's just that life looks nothing like we thought it would but that's not becessarily a bad thing!
Take care and keep posting.