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Name of worse case only 2% suffer from

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Unregistered member

24/06/2018 at 15:20

My partner had been told she has the worse case of lupus only 2% in a million suffer from

can anybody tell me what the form of lupus she has is called

I want to help her but she is very strong willed and it’s tearing me apart not being able to help

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JosephineO

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19/11/2018 at 09:53

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 17 in the Lupus Forum

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Hello @James121‍, how is your wife doing now?

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Josephine, Community Manager

Name of worse case only 2% suffer from https://www.carenity.co.uk/forum/lupus/living-with-lupus/name-of-worse-case-only-2-suffer-from-2419 2018-11-19 09:53:49

Unregistered member

19/11/2018 at 13:14

Alison is my partner and to be honest she is not doing very well

the doctors have said they have never seen a lupus case like this before. We are now awaiting the results to see if her cancer is back also

James

Name of worse case only 2% suffer from https://www.carenity.co.uk/forum/lupus/living-with-lupus/name-of-worse-case-only-2-suffer-from-2419 2018-11-19 13:14:09

JosephineO

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19/11/2018 at 14:25

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 17 in the Lupus Forum

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@James121 Hi James,

I am very sorry to hear that, lupus is such a difficult disease so my thoughts are with your partner.

Here is a link to a testimonial that one of our members did about her lupus. It might help you a bit to read about someone else's experience.

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Josephine, Community Manager

Name of worse case only 2% suffer from https://www.carenity.co.uk/forum/lupus/living-with-lupus/name-of-worse-case-only-2-suffer-from-2419 2018-11-19 14:25:39

Unregistered member

19/11/2018 at 19:24

To be honest we have lost all confidence in the NHS it’s now 8 months and they have done nothing but keep taking bloods

no treatment no help just going around in circles

the only thing that had helped is that she smokes cannabis to numb the pain, and she is being prescribed this via her doctor

but we still keep smiling and laughing or we would go mad

Name of worse case only 2% suffer from https://www.carenity.co.uk/forum/lupus/living-with-lupus/name-of-worse-case-only-2-suffer-from-2419 2018-11-19 19:24:52

Tourist

27/11/2018 at 09:38

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Last activity on 16/07/2020 at 15:48

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@James121 My diagnosis for lupus was very difficult and long...sometimes I felt like the doctors didn't know what they were doing.

I have tried CBd oil and it worked well for me too. It's good you can keep laughing together and support each other, that is what life is about...

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Tourist

Name of worse case only 2% suffer from https://www.carenity.co.uk/forum/lupus/living-with-lupus/name-of-worse-case-only-2-suffer-from-2419 2018-11-27 09:38:15

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Unregistered member

21/11/2016 at 15:19

I had a hip replacement 16 months ago due to osteoarthritis. I can honestly say it was the best decision I have ever made. Yes I was not looking forward to everything post op, but I am now 100% mobile and after not being able to walk any distances I now enjoy walking again and I've managed to lose 2.5 stones. Totally pain free and I've had lots of comments about how much happier I look - my face was obviously showing my pain. If you have any questions please ask!

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Unregistered member

21/11/2016 at 15:19

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Name of worse case only 2% suffer from

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