Contribute your views to new research looking at ... - LUPUS UK

LUPUS UK
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Contribute your views to new research looking at diet and lupus

Paul_Howard
Paul_HowardAdministrator
10 Replies

A group of researchers at University College London (UCL) want to increase our understanding of what causes lupus so that we can improve and develop new treatments. They have a new and exciting idea that they believe could help to reduce disease severity. Before starting this project, they would like to find out from you whether you think this is an important area to investigate, and whether you have any experiences that could help them improve their research.

If you have lupus, please spare a few minutes to complete the short survey at surveymonkey.co.uk/r/V2P3CQD

10 Replies
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_jenc_

Thanks for this Paul_Howard, I completed it over on Twitter and it looks very interesting!

1 like
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Paul_Howard
Paul_HowardAdministrator
in reply to _jenc_

Thanks _jenc_ :)

1 like
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LupusKaren

Completed survey.

1 like
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Paul_Howard
Paul_HowardAdministrator
in reply to LupusKaren

Thanks LupusKaren :)

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LupusMum23

My daughter has recently been diagnosed with Lupus and I have been staggered by the Consultants flippant dismissal of diet and its effects. We introduced a vegan and wheat free diet as soon as she was diagnosed and just three short weeks later her butterfly rash is gone and her pain has decreased substantially. Infra red saunas appear to help too. She wants to try and avoid steroids and anti malarial drugs and is hoping that a strict diet and supplements (tumeric, aloe vera and B12) . Also Cannabis oil appears to have helped hugely too! I wish you success in your survey.

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Paul_Howard
Paul_HowardAdministrator
in reply to LupusMum23

Thank you for sharing your daughter's experiences LupusMum23. It is surprising that a consultant would be dismissive of the impact that a healthy diet and lifestyle can have in helping to manage some symptoms. I am very pleased to hear that the changes have been beneficial so far.

I would advise caution when it comes to certain supplements as they can potentially have adverse effects in lupus or interact with other treatments. Turmeric is an example of this. We would always recommend that you discuss any supplements or complementary therapies with a doctor before starting them.

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sflynn84

I am happy to see that they are looking at the connection between lupus symptoms and diet. Food is fuel for our bodies, even those that don't have chronic illness feel better when eating a healthy diet. I will take the survey.

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HelenL75

Interesting survey- all completed 👍

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bluetit42

hello paul i have finally been offered an appointment with another lupus specialist under UCL its taken a long while. if you remember i was diagnosed with lupus by tw specialists 5/6 years ago, treated for lupus then told out of the blue i never had lupus. hoping to get some answers and thank you for your support

1 like
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Paul_Howard
Paul_HowardAdministrator
in reply to bluetit42

Hi bluetit42,

I'm glad to hear that you have an appointment with a lupus specialist coming up. I hope that it helps resolve this problem for you. If you need any tips on preparing for your consultation or article here may be helpful - lupusuk.org.uk/getting-the-...

Let us know how you get on.

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