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Amanda Thorpe

Transition to Illness

2 posts in this topic

We would like to introduce ourselves to you. Our names are Liz Price and Liz Walker. We are both based in the social work department at the University of Hull and are involved in a research project entitled ‘Transitions to Illness: understanding the lived experience of Systemic Lupus Erythematosus (SLE). The research has different components, one of which involves conducting face-to-face interviews with people with SLE.

 

The second involves the use of e-research, namely, the establishment of a research blog in which people are invited to respond to specific questions about their experiences of SLE. We are in contact with many on-line fora and organisations that offer support to people with a range of autoimmune conditions and have requested their support with this work, given that there are significant overlaps between the various conditions. We are very interested in the relationships, the connections and overlap between the various autoimmune conditions and are aware that there can be significant overlaps between SLE and scleroderma. Our research to date suggests that this may be the case in the context of the diagnostic process, where people may experience a range of possible diagnoses before the correct one is reached.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Everyone,

 

I'm one of the researchers working on this project and thought it might be useful to give you a bit more information about the work we’re doing.

 

The research blog mentioned above has been up and running for a few weeks now and contributors have been very generous in sharing their personal experiences with us.

 

Given that the principal focus of the work is SLE, most of the contributors on the blog do have lupus, but many have also experienced a range of diagnoses before arriving at that particular one.

 

We’re also aware that there’s lots of overlap between the various autoimmune conditions, so are very keen to also hear from people who may have scleroderma, Hughes syndrome, Sjogren’s etc.

 

One of our principal aims is to explore patients’ experiences of autoimmune conditions (something that has received little attention in the academic and medical communities, at least) and to ensure that the voice of those with these conditions is recognized and heard. We are hoping to share the results of our work widely, informing service users and both the academic and medical communities of our findings.

 

Please feel free to visit the blog and find out what’s going on there – we hope that you will feel able to contribute.

 

If anyone would like more information, please don’t hesitate to ask.

 

Very best wishes,

 

Liz Price.

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