Rare Disease UK Patient Experience Survey 2020

[Paul_Howard]

Hi everyone,

We would like to invite all members of this community who live in the UK to take part in this online survey. It is designed to capture the experience of patients affected by rare and undiagnosed conditions, and their carers. It should take approximately 30 minutes to complete.

surveymonkey.co.uk/r/rarean...

[GloomyEeyore]

I just completed the survey but questions 22 and 44 have an answer missing off the end. Non applicable couldn’t be clicked

[Paul_Howard Partner LUPUS UK in reply to GloomyEeyore]

Hi GloomyEeyore . I'm sorry you couldn't answer all the questions to accurately reflect your experiences. Unfortunately I don't have an email address for the researchers to notify them of this.

[Wendy39]

Thank you Paul.

[Willow1414]

Survey complete ❤️🦋

[KernieStrawb]

I have completed the survey. The more of us with lupus who complete it, the louder our voices will be.

[EOLHPC]

Yikes.: getting through that survey was quite a big experience! Thanks for warning us it’d take approx 30 min 😅! I did find it complicated cause I am diagnosed with several overlapping rare primaries including SLE, but nothing can be done about that 🤷🏼‍♀️.Thanks for posting, Paul. I found the questions very interesting & I hope the conclusions drawn help us all - including invaluable support groups like LUK. ❤️🍀Coco

[Spotty-ewe]

Thanks Paul. Just completed the survey. Phew, quite a long one but hopefully helpful to them. 🤞 Takce acre.

[Whippet_lady]

I've completed the survey as much as I could but I didn't understand most of it or know if it applied to me as I haven't had anything explained to me. All I can go off are snippets I've picked up along the way on here or the internet, which I was told not to do. All the official stuff is too depressing to read without the back-up of a health professional to explain, and a lot of it isn't applicable to me but makes me wonder if it is or should be. It's very much, as everything is, a square peg round hole scenario, too general.

What's all this genetic/genomic stuff about? Does that apply to me? If so, why haven't I been told or had it explained? If it's genetic does that mean my kids are at a higher risk of getting it? Is it something they need to keep an eye out for? Is it a ticking time bomb for all of us? I asked at the beginning if lupus was hereditary and told it wasn't but if it's genetic...?

I hate everything about my new situation.

[Paul_Howard Partner LUPUS UK in reply to Whippet_lady]

Hi Whippet_lady ,

This survey isn't specifically for people with lupus but for all rare diseases. A very large proportion of rare diseases are genetic, which is why there may have been questions about this.

Lupus develops through a combination of a genetic predisposition and environmental factors. Due to the large number of genes believed to have a role in lupus, it is quite uncommon for the disease to develop in close relatives of those with the illness.