Survey for end of year lupus school project

[Chanpreet_Walia]

Adia Flotats, a soon to be medical student at Hospital Clínic de Barcelona is researching lupus for her end of year project.

Adia has created two surveys one for lupus patients and one for family members of lupus patients. Results from the surveys will be made available to LUPUS UK at the end of the project.

If you would like to take part please visit:

Lupus patient survey - docs.google.com/forms/d/e/1...

Family member of lupus patient - docs.google.com/forms/d/e/1...

[Kevin53]

Please support this young lady. Best wishes Kevin

[EOLHPC]

Thanks Lupus UK for supporting Adia👏👏👏👏

🤩Great patient survey: one of the best I’ve completed... appropriate, well informed questions, relevant, thoughtful + easy to understand & answer...Job done within 10 minutes! Well done & Good luck Adia

THANK YOU 💐 ❤️🍀Coco

PS 👍asking my husband to complete the family survey...& have emailed the family survey link to my sister + brother...but have no offspring (All the early onset primary illness made me infertile) & don’t think I can get our Badger’s Wood wildlife family to do the survey 😉, so 🤷🏼‍♀️😆

[EOLHPC in reply to EOLHPC]

PS 👍I can totally relate to others finding probs with the exercise yes/no question...👍I did have to think hard before replying ‘yes’....🤷🏼‍♀️ but I could truthfully reply ‘yes’... cause, despite severe persistent & progressive multisystem debilitation + physical disability due to SLE, my bod has always found some way I could continue some sort of exercise, even if only meditation (🧠 excercise 😉)+ gently wiggling my toes & fingers....

guess what’s helped a lot is that, during my terrible 66 years of infant onset Lupus, excercise techniques & specialist exercise advice for us disabled folk have improved loads, so this has helped me (plus the internet making specialist exercise advice more available..eg Lupus UK’s website exercise advice + the exercise advice I’ve read over my past 10 years here on forum )

And for sure my mental & emotional health would have suffered even more than it has without at least a tiny bit of cautious excercise (mental &/or physical) as much of the time as I could reasonably manage it...so this is how I justify having replied yes to Adia’s exercise question even though my ability to excercise is extremely restricted due to significant multisystem disabilty caused by lupus & its secondaries🤝🤞✌️ 🍀❤️🍀❤️

[littleeed]

Morning. I have just completed the survey. Easy to fill in. The only question I would have liked a third option was the exercise one. I try to exercise but find it so difficult at the moment. I answered no to the question but would have liked to say 'yes when I am able to'

I am having a prolonged flare at the moment. I don't know how many other people share this problem of exercise. Lots of luck Adia xx

🙄

[Apricot100]

Done. Grateful to all medical specialists, especially those at the start of their career taking an interest in lupus. Also Agree with littleeed- I exercise when I can, so was neither yes or no to regular exercise x