Help!: my mum was diagnosed with... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Help!

Melaniehunt profile image
3 Replies

my mum was diagnosed with raynaulds &scleroderma about 6 years ago after years of doctors not knowing what was wrong.

This week she has been admitted to hospital with breathing difficulties and chest tightening

They have ruled out a heart attack but we are waiting tests for fibrosis on the lungs/heart due to the raynaulds/scleroderma

Please please can someone tell me if anybody else has gone through this?

Mum would rather "bury her head in the sand" as she puts it but after 3 nights of not sleeping and crying need to know if I can help her!! Xx

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Melaniehunt profile image
Melaniehunt
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3 Replies
Anteater profile image
Anteater

Melanie, Fibrosis is common with Scleroderma and there are a lot of people on here with it. However, please call or email the Raynauds and Scleroderma Association - they all have a wealth of knowledge about our Condition /s and will provide you with excellent help and advice. Good luck xxx

zenabb profile image
zenabb

There is a lot you can do to help your mother. They are trying to find out how she is affected. I am 82 and I have survived a lot over the years. Don't get upset, be positive, it will do her good. She needs to be cheered up. Meanwhile when she needs something to sooth her symptoms ask her if she wants you to do it or whether she prefers to do it herself. It is going to last a long time whatever he has got and she will want to have a life as normal as possible. As ask us any further questions about how to help if you wish.

Best wishes to you and your mother and your family.

Sienna profile image
Sienna

I don't know where you live but I know that the University of Michigan has an excellant program that deals with the lungs and heart problems that are a result of having Scleroderma.

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