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Autoimmune disease

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Advanced Systemic Sclerosis / Scleroderma

1 reply

daisychains74 · 05/07/2023 19:02

Hi Mumsnet,

Does anybody have any experience with advanced stages of systematic sclerosis?

A close family member has recently been diagnosed and they are very unwell, struggling to breathe due to a lot of fluid and scarring on the lungs, sleeping all the time, hands are swollen and blue, severe weight loss. It is very upsetting to see and we feel very helpless at this time.

Has anybody had any experience of this and can share their advice, tips, or what to expect? Thank you.

OP posts:
Endofroadinhs · 14/07/2023 22:56

Hi, can I suggest going onto the ‘health unlocked’ website there is lots if info and an active forum on scleroderma/ sclerosis.
People will help you there x

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