The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) has just launched a new online survey to make sure that the views and experiences of people with rare autoimmune rheumatic diseases (such as lupus) are represented and recognised at the highest levels.
The short, anonymous, survey is for people living in the UK with one of these conditions. It covers a range of questions, from how clear government advice has been to how your normal appointments and care have been impacted.
GCA is on the list at rairda.org/ so you can all help
Filling in this survey will help us raise issues around the impact of COVID-19 on people with these conditions, but we also hope to explore ways care could be improved in the longer-term.
The survey should only take a few minutes to complete, with most questions being multiple choice.
You can find out more about RAIRDA on their website at rairda.org/
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Done. I made an extra point that although my current GCA status doesn’t put me at greater risk, other conditions or effects of past treatments do, including scarred lung. However, they do not come up as the main conditions in the tick boxes so I slipped through the net. Anyway, I think I’ve had it and everyone else in the household and I got through.
Yes, it was a chain reaction from early March. Me first which took about a month for my breathing to normalise, then the daughters, though my husband may have had it earlier but very subtly. The surprise of the show was my 83 year old father-in-law who lives with us with COPD, asthma, and lung rotten lung scans for years. I nursed him through it and thought this was going to be it at one point, but then suddenly he turned a corner and his breathing stabilised. Just shows that you just can’t tell who is going to succumb or not. Interestingly both our dogs got a dry cough and went off their food and walks for a week. Anyway, I’m a bit shell shocked and finding that 5 adults in the house all the time generate a lot more work (including trying to delegate) and food shopping!
I went on the main site and found the covid 19 impact form for vasculitis among other things...wondering if that includes PMR?? I don't know much about the organisation and haven't considered PMR that rare. 🤯
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