Lupus Awareness Month: Days 11, 12, 13, 14 and 15

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I is for immunology, inflammation, information and interferon alpha

J is for joints

K is for kidneys

L is LUPUS!

M is for… medicine, mindfulness and meditation

So on Saturday I attended (along with about 300 others) a conference near Cambridge about Lupus. It had been organised by the Cambridge Lupus group and included talks by a range of health professionals from Addenbrookes Hospital.

It covered aspects of research into new drugs, how Lupus affects the skin and hair, stress relief, exercise. how to make the most of what energy you have to name a few…

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This is a schematic of interferon alpha; I found out about this very important protein and the job it does in the immune system. if you click on the pic you will be taken to wikipedia for a full explanation but essentially interferon alpha is released by cells in response to pathogens such as viruses and enable communication between cells so that the body’s protective defences are triggered. As Doctor Jayne explained, in lupus the interferon alpha gets a little over excitable. He has been extensively involved with research into drug efficacy in lupus and brought us up to date regarding the development of biologic drugs for the treatment of lupus and where he thinks the future lies- hence the reference to interferon alpha as a possible target for biologic drug therapy. Interesting stuff.

The two key biologic drugs that are currently in use are rituximab and belimumab but I understand them to be in the realms of final resorts where other standard regimes have been unsuccessful and are restrictive in this country due to cost. Unfortunately for those in the UK living with the more serious effects of lupus. The following is an extract from the LUPUS UK website

NICE decision on Belimumab

Following our attendance as ‘patient expert’ throughout the NICE Appraisal of Belimumab and our submission to the appeal process, LUPUS UK is very disappointed that NICE’s decision is not to approve the use of this drug for the small number of lupus patients who have not responded to other treatments for this auto-immune condition.

Lupus is extremely difficult to live with, severely curtailing many aspects of life and in some cases can be life-threatening. Current treatments include steroids and chemotherapy drugs, which have serious side-effects, and unfortunately are still not effective for some patients. New, targeted treatments which have fewer side effects are desperately needed, in particular for those most severely affected.

“Belimumab has been approved by both the FDA and EMA: NICE’s decision leaves lupus patients living in the UK, who are at serious risk from this life-threatening illness, with no access to this valuable drug. Our recommendation at the appeal was that the drug be used by the most experienced lupus consultants in very severe cases where other medications have failed to show benefit, and that all treatment with this biologic are registered on the Biologics Registry which already exists. As well as giving reassurance to patients, this would give clear evidence of how effective this drug is,” said Jane Dunnage, Chair of LUPUS UK who herself has lupus.

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The other aspect of the conference which I personally found interesting was the talk about reducing stress by the Occupational Therapist. Not only did she provide some useful insight into managing stress and using energy wisely, she led us through one ‘mindfulness’ approach and referenced many others. I have previously known this type of relaxation as either a guided meditation or using visualisation. Perhaps there is a subtle difference I am not aware of. I have found one website that tells you a little more, there are others available! Click the water…

Tranquil Surface

With that in mind I can definitely suggest that you take a look at The Honest Guys, Youtube channel who are experts in bringing peace and tranquility to us through the internet! Try this wonderful relaxation for size and the beauty is that it is free!

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On that peaceful note I will leave  you for today…

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Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

One thought on “Lupus Awareness Month: Days 11, 12, 13, 14 and 15

  1. Pingback: Lupus Awareness Month: Days 22, 23 & 24 | ONOODLES

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