Diagnosed today at age 26 :( any advice?

Hi all, after spending the last 6 hours trawling Google I have came across this forum. I have been diagnosed today with scleroderma, I have suffered from worsening raynauds for 10-15 years. Only plucked up the courage this year to speak up. Self managed this for so long. I didn't think this would be caused from underlying disease...

To say I'm in shock is an understatement. I am awaiting lung and heart tests. Nail tests positive, symptoms and anti bodies positive. 

Please give me some hope that this disease isn't as bad as I have found on Google! 

Look forward to hearing from you all 

X

3 Replies

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  • Hi Lauren,

    Yes, it was a terrible shock in 1995, I had 2 young children, just moved back to the UK and didn't know anybody around. Had a very aggressive onset with lots of issues, (double vision, ulcers, fatigue, bent fingers, ischaemia in legs, could not keep head upright due to muscle wasting in my neck.. etc)  lung fibrosis being the worst. Bed-bound for months. To cut a long story short: 20 years on I am in good health, stable lungs with 63% DLCO (oxygen passing from lung tissue into blood), I swim an hour every day and have a normal life style. I do not lift, climb, run.. otherwise my life is normal. I do not suffer from fatigue anymore, my vision is good, my fingers straight. I was lucky to have a less aggressive antibodies Ro and La. Scl-70 is less benign. The 5 year immunosuppression with cyclophosphamide and azathioprine was tough but afterwards it was a smooth ride upwards. 15 years ago I met a lady with Scl-70 and breast cancer, she is also doing well; the cancer is gone and her condition otherwise is similar to mine.

    All in all, there are happy endings, so please do not dispair prematurely. There may be rough patches but it does get better for most people. I can recommend CORPITOL EMULSION for ulcers.. it is miraculous! Didn't exist 20 years ago. Otherwise keep your mind busy as much as you can. I think I had a self-defense mechanism, psychologically speaking, which made me separate my mind from my body when I was not in pain, I became an observer who was watching "the patient". Read a lot of medical papers, which was not always a pleasant thing to do, but I also realised that only the poorest cases become research cohorts and that there are masses of people who do well, recover, lead normal lives and nobody writes about them. So do not worry about the death rates, they are scary. Please contact me if I can help you in any way.. just chatting may very very liberating. I was completely alone all week, my husband worked abroad 5 days a week, that was the worst.  I hope I could give you some positive vibe. I will be gardening today again, I can do it now for 10 hours with short breaks so please do not lose hope!!  hug. Grace

  • Join scleroderma  and Raynands  now might be called  surk  it might be as bad as you think .. But they will do the tests anyway  . As it will also help in meds.  

  • Hi I was diagnosed almost 3 yrs I had to give up work 2 yrs ago because of mainly the aching limbs and fatigue I'm still finding it hard to adjust some days are good and I live in hope that better days will come soon, would be nice to go back to work one day! So far nothing serious is happening everything is working as well as expected but it's a hard life just getting up in the morning is a struggle but I stay positive and count my blessings because it could be a lot worse! I'm 47 take care x

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