Mixed connective tissue: Anyone with... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Mixed connective tissue

Ela1 profile image
Ela1
4 Replies

Anyone with miże connective tissue? Do you know what is life expectancy?

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Ela1 profile image
Ela1
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4 Replies
LucyJean profile image
LucyJean

Hi there, there is no global number for 'life expectancy' that applies to anyone with any form of connective tissue disease, whether that is mixed connective tissue disease, scleroderma etc. The impact on your life is very specific to the nature of your symptoms and whether you have significant organ involvement. There is not some magic number like '10years'...despite what any ridiculous website might tell you.

This is only a discussion that you can have with a Consultant who knows all your symptoms, all your test results and has been treating you for a while. There is no one on this site who will be able to tell you your life expectancy.

For the majority of people their quality of life is significantly affected, but their length of life may not be. Again, it depends on your specific case.

Please do not be worrying about things like this. Just find yourself a Consultant who knows what they are doing, get treatment, and follow their advice. Do everything you can to look after yourself and that way you give yourself the best chance of living. You are not necessarily doomed to an early demise (especially with MCTD) and worrying about it will only make you miserable and contribute to mental suffering, making you less likely to do all the helpful things that you can do to manage your condition.

All my best

Lucy xx

Intimeslikethese profile image
Intimeslikethese

I fully agree with Lucy’s response. It brought to mind, 31 years ago with the birth of my daughter being told she only had a 3% chance of making it. I don’t have an answer to your question but yet another question. Do you find with MCTD that you have fibroblasts or keloids on your skin as one of the symptoms? I was diagnosed with scleroderma and am having issues with this. Thanks.

zzcat profile image
zzcat

I’m in complete agreement with the two previous replies, having been diagnosed myself about 30 years ago. Yes, it can be a struggle at time, much like playing whack- a- mole, but with a good doctor and ever evolving medicine, you can have a bright productive future.

Good luck!

Sanmateogirl107 profile image
Sanmateogirl107

GET INTO A HOBBY TRY TO DEFLECT YOUR BRAIN FROM PAIN. ASK ABOUT PAIN CLASSES AT YOUR HOSPITAL. FAMILY SUPPORT AS WELL GOES A LONG WAY. TRY JOURNALING ALSO GOOD LUCK JULIE

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